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Tolf, A., Gauffin, H., Burman, J., Landtblom, A.-M. & Flensner, G. (2024). Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study. PLOS ONE, 19(2), e0297573-e0297573
Öppna denna publikation i ny flik eller fönster >>Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study
Visa övriga...
2024 (Engelska)Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 19, nr 2, s. e0297573-e0297573Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Background

Autologous haematopoietic stem cell transplantation (AHSCT) is increasingly used as a treatment for aggressive multiple sclerosis (MS) and has the potential to induce long-term remission and resolution of disease activity. Despite the extensive research on treatment outcome after AHSCT, the experience of living with MS after AHSCT has not been previously described in the scientific literature. The aim of this study was to explore long-term lived experience of people with MS treated with AHSCT.

Methods and findings

To exclude selection bias, all persons treated with AHSCT for MS at Uppsala University Hospital, Sweden, between 2004 and 2007 (n = 10), were asked to participate in the study, and all accepted. Open-ended interviews were conducted, digitally recorded, transcribed verbatim, and then subjected to qualitative content analysis with an inductive approach. Five main themes emerged from the interviews: (I) being diagnosed with MS–an unpredictable existence; (II) a new treatment–a possibility for a new life; (III) AHSCT–a transition; (IV) reclaiming life; and (V) a bright future accompanied by insecurity. AHSCT was described by the participants in terms of a second chance and an opportunity for a new life. The treatment became a transition from a state of illness to a state of health, enabling a previous profound uncertainty to wane and normality to be restored. Although participants of different age and sex were included, the main limitation of this study is the relatively small number of participants. Also, the inclusion of persons from one centre alone could restrict transferability of the results.

Conclusions

The results give a first insight into lived experience following a highly effective induction treatment for MS, and the experience of not having MS anymore. Underpinned by previously described outcome following AHSCT, the results of this study challenge the current view on MS as a chronic disease with no possible cure.

Nyckelord
experiences, autologous haematopoietic stem cell transplantation, multiple sclerosis
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-21242 (URN)10.1371/journal.pone.0297573 (DOI)38324607 (PubMedID)
Anmärkning

CC BY 4.0

Tillgänglig från: 2024-02-13 Skapad: 2024-02-13 Senast uppdaterad: 2024-02-13
Tolf, A., Gauffin, H., Burman, J., Landtblom, A.-M. & Flensner, G. (2024). Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study. PLOS ONE, 19(2), e0297573-e0297573
Öppna denna publikation i ny flik eller fönster >>Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study
Visa övriga...
2024 (Engelska)Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 19, nr 2, s. e0297573-e0297573Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Background: Autologous haematopoietic stem cell transplantation (AHSCT) is increasingly used as a treatment for aggressive multiple sclerosis (MS) and has the potential to induce long-term remission and resolution of disease activity. Despite the extensive research on treatment outcome after AHSCT, the experience of living with MS after AHSCT has not been previously described in the scientific literature. The aim of this study was to explore long-term lived experience of people with MS treated with AHSCT.

Methods and findings: To exclude selection bias, all persons treated with AHSCT for MS at Uppsala University Hospital, Sweden, between 2004 and 2007 (n = 10), were asked to participate in the study, and all accepted. Open-ended interviews were conducted, digitally recorded, transcribed verbatim, and then subjected to qualitative content analysis with an inductive approach. Five main themes emerged from the interviews: (I) being diagnosed with MS–an unpredictable existence; (II) a new treatment–a possibility for a new life; (III) AHSCT–a transition; (IV) reclaiming life; and (V) a bright future accompanied by insecurity. AHSCT was described by the participants in terms of a second chance and an opportunity for a new life. The treatment became a transition from a state of illness to a state of health, enabling a previous profound uncertainty to wane and normality to be restored. Although participants of different age and sex were included, the main limitation of this study is the relatively small number of participants. Also, the inclusion of persons from one centre alone could restrict transferability of the results.

Conclusions: The results give a first insight into lived experience following a highly effective induction treatment for MS, and the experience of not having MS anymore. Underpinned by previously described outcome following AHSCT, the results of this study challenge the current view on MS as a chronic disease with no possible cure.

Nyckelord
multiple sclerosis, Autologous haematopoietic stem cell transplantation
Nationell ämneskategori
Hematologi Neurologi
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-21308 (URN)10.1371/journal.pone.0297573 (DOI)38324607 (PubMedID)2-s2.0-85184619572 (Scopus ID)
Anmärkning

CC-BY 4.0

Tillgänglig från: 2024-02-26 Skapad: 2024-02-26 Senast uppdaterad: 2024-02-26
Flensner, G. (2019). Det vetenskapliga ämnet (3.ed.). In: Elisabeth Dahlborg (Ed.), Att bli sjuksköterska: en introduktion till yrke och ämne (pp. 103-129). Lund: Studentlitteratur AB
Öppna denna publikation i ny flik eller fönster >>Det vetenskapliga ämnet
2019 (Svenska)Ingår i: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Elisabeth Dahlborg, Lund: Studentlitteratur AB, 2019, 3., s. 103-129Kapitel i bok, del av antologi (Övrigt vetenskapligt)
Ort, förlag, år, upplaga, sidor
Lund: Studentlitteratur AB, 2019 Upplaga: 3.
Nyckelord
Sjuksköterskor, kunskapsområden, omvårdnad
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-14379 (URN)9789144125350 (ISBN)
Tillgänglig från: 2019-09-05 Skapad: 2019-09-05 Senast uppdaterad: 2019-11-12Bibliografiskt granskad
Flensner, G. (2019). Vem är patienten? (3.ed.). In: Elisabeth Dahlborg (Ed.), Att bli sjuksköterska: en introduktion till yrke och ämne (pp. 133-147). Lund: Studentlitteratur AB
Öppna denna publikation i ny flik eller fönster >>Vem är patienten?
2019 (Svenska)Ingår i: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Elisabeth Dahlborg, Lund: Studentlitteratur AB, 2019, 3., s. 133-147Kapitel i bok, del av antologi (Övrigt vetenskapligt)
Ort, förlag, år, upplaga, sidor
Lund: Studentlitteratur AB, 2019 Upplaga: 3.
Nyckelord
Patienter, lidande, upplevelser
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-14380 (URN)9789144125350 (ISBN)
Tillgänglig från: 2019-09-05 Skapad: 2019-09-05 Senast uppdaterad: 2019-11-12Bibliografiskt granskad
Flensner, G. & Rudolfsson, G. (2018). A pathway towards reconciliation and wellbeing: A spouse's experiences of living with a partner diagnosed with early-onset dementia. Nordisk sygeplejeforskning, 8(02), 136-149
Öppna denna publikation i ny flik eller fönster >>A pathway towards reconciliation and wellbeing: A spouse's experiences of living with a partner diagnosed with early-onset dementia
2018 (Engelska)Ingår i: Nordisk sygeplejeforskning, ISSN 1892-2678, E-ISSN 1892-2686, Vol. 8, nr 02, s. 136-149Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

When someone falls ill with dementia it affects the whole family. Therefore, the aim of thisqualitative single case study was to increase understanding of one female spouse´s experiencesof living with a husband/partner diagnosed with early-onset dementia before the ageof 40 years. Two open-ended interviews with the female spouse were performed sixmonths apart and analysed for narrative structure and themes. The single case is describedin the form of a story and organised along a time line comprising four phases; «Somethingis wrong», «Becoming aware of what is wrong», «Life is restricted» and «Towards reconciliation».Healthcare professionals should meet spouses with respect, listen to them and providepractical support, thus giving them the opportunity to rest, obtain respite and time ontheir own to enable reconciliation and wellbeing.

Nyckelord
Caregiver, frontotemporal dementia, health, spouse, struggle, suffering, time
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-12700 (URN)10.18261/issn.1892-2686-2018-02-05 (DOI)000434374000005 ()
Tillgänglig från: 2018-07-05 Skapad: 2018-07-05 Senast uppdaterad: 2024-03-18Bibliografiskt granskad
Berntsson, S. G., Landtblom, A.-M. & Flensner, G. (2017). Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences. PLOS ONE, 2(6), Article ID e0180054.
Öppna denna publikation i ny flik eller fönster >>Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences
2017 (Engelska)Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 2, nr 6, artikel-id e0180054Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Elucidating patients´ experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants' experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/ taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants' personal life, employment, and daily activities. The participants' experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.

Nyckelord
chronic progressive hereditary ataxia, treatment, patient experience
Nationell ämneskategori
Omvårdnad Neurologi
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-11256 (URN)10.1371/journal.pone.0180054 (DOI)000404541500051 ()28654671 (PubMedID)2-s2.0-85021348301 (Scopus ID)
Tillgänglig från: 2017-08-02 Skapad: 2017-08-02 Senast uppdaterad: 2021-06-14
Flensner, G. & Rudolfsson, G. (2016). Learning to fly with broken wings - forcing a reappraisal of time and space.. Scandinavian Journal of Caring Sciences, 30(2), 403-410
Öppna denna publikation i ny flik eller fönster >>Learning to fly with broken wings - forcing a reappraisal of time and space.
2016 (Engelska)Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, nr 2, s. 403-410Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

BACKGROUND: When living with a chronic disease, the whole human being is affected and his/her experience of health challenged.AIM: This study had a dual aim: to obtain a new understanding of experiences of the body among persons suffering from the chronic neurological disease multiple sclerosis (MS) and how they come to terms with such experiences.

METHOD: A total of ten interviews were re-analysed using a hermeneutic approach.

RESULTS: The experiences of the body were revealed as 'Learning to fly with broken wings', comprising two themes: 'Getting to know the foreign body' and 'Building a new living space', both requiring reappraisal of time and space.

CONCLUSION: Living with a chronic disease such as MS means learning to fly with broken wings, which involves subordination to the body leading to a higher level of integration in the process of becoming towards health and well-being.

Nyckelord
adjusting life, health, hermeneutic, secondary analysis, space, suffering, time, unknown body
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-7852 (URN)10.1111/scs.12262 (DOI)000383802300021 ()26235833 (PubMedID)2-s2.0-84938219544 (Scopus ID)
Tillgänglig från: 2015-08-12 Skapad: 2015-08-10 Senast uppdaterad: 2017-12-04Bibliografiskt granskad
Smedman, A., Gustafsson, K. & Flensner, G. (2015). Att vårda äldre personer på särskilt boende under livets slutskede: Undersköterskornas perspektiv. Nordisk sygeplejeforskning, 5(2), 79-92
Öppna denna publikation i ny flik eller fönster >>Att vårda äldre personer på särskilt boende under livets slutskede: Undersköterskornas perspektiv
2015 (Svenska)Ingår i: Nordisk sygeplejeforskning, ISSN 1892-2678, E-ISSN 1892-2686, Vol. 5, nr 2, s. 79-92Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

In Sweden, reforms in health and social care for older people were impplemented in 1992 (Ädelreformen) and provided older people with the opportunity to be cared for in their own homes, under the responsibility of the local municipality. Most of the older people choose to live in their own home or in sheltered housing, a so-called special housing, for rest of their lives and are able to recieve extensive nursing care, including palliative care. Thus, palliative care has shifted from care at hospitals to care in own homes or special housing, which has increased the demands placed on nursing staff. The aim of this study was to elucidate the meanings the nursing staff expressed as regards caring for older persons in special housing in a palliative stage. Qualitative interviews with eight assistant nurses were performed. The inter-views were recorded, transcribed verbatim and analysed using qualitative content analysis. To care for an old person in the palliative stage means  "Caring for a friend", "Creating a calm and peaceful death", "Giving support to relatives" and "Alternating between feelings of powerlessness and satisfaction". When an old person died, the assistant nurse mourned him or her as the would a friend. Amongst the colleguages, the assistant nurses experienced a sense of security, which meant openness and the courage to discuss and reflect upon their feelings, both during the care and after the death. Despite this there was a need for more time to grieve after the death.

Nyckelord
Caregiver, content analysis, experience, nursing, palliative care, Innehållsanalys, omvårdnad, palliativ vård, personal, upplevelse, äldre
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-7659 (URN)
Tillgänglig från: 2015-06-02 Skapad: 2015-06-02 Senast uppdaterad: 2024-03-18Bibliografiskt granskad
Gauffin, H., Flensner, G. & Landtblom, A.-M. (2015). Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children. Neuropsychiatric Disease and Treatment, 11, 1291-1298, Article ID NDT.S74222.
Öppna denna publikation i ny flik eller fönster >>Being parents with epilepsy: thoughts on its consequences and difficulties affecting their children
2015 (Engelska)Ingår i: Neuropsychiatric Disease and Treatment, ISSN 1176-6328, E-ISSN 1178-2021, Vol. 11, s. 1291-1298, artikel-id NDT.S74222Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Objective: Parents with epilepsy can be concerned about the consequences of epilepsy affecting their children. The aim of this paper is to describe aspects of what it means being a parent having epilepsy, focusing the parents’ perspectives and their thoughts on having children.

Methods:

Fourteen adults aged 18–35 years with epilepsy and subjective memory decline took part in focus-group interviews. The interviews were conducted according to a semi-structured guideline. Material containing aspects of parenthood was extracted from the original interviews and a secondary analysis was done according to a content-analysis guideline. Interviews with two parents for the Swedish book Leva med epilepsi [To live with epilepsy] by AM Landtblom (Stockholm: Bilda ide; 2009) were analyzed according to the same method.

Results:

Four themes emerged: (1) a persistent feeling of insecurity, since a seizure can occur at any time and the child could be hurt; (2) a feeling of inadequacy – of not being able to take full responsibility for one’s child; (3) acknowledgment that one’s children are forced to take more responsibility than other children do; and (4) a feeling of guilt – of not being able to fulfill one’s expectations of being the parent one would like to be.

Conclusion:

The parents with epilepsy are deeply concerned about how epilepsy affects the lives of their children. These parents are always aware that a seizure may occur and reflect on how this can affect their child. They try to foresee possible dangerous situations and prevent them. These parents were sad that they could not always take full responsibility for their child and could not live up to their own expectations of parenthood. Supportive programs may be of importance since fear for the safety of the child increases the psychosocial burden of epilepsy. There were also a few parents who did not acknowledge the safety issue of their child – the authors believe that it is important to identify these parents and provide extra information and support to them.

Nyckelord
Focus group interviews, qualitative research, secondary analysis, guilt, feeling of inadequacy, insecurity
Nationell ämneskategori
Neurologi
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-7607 (URN)10.2147/NDT.S74222 (DOI)000355122200001 ()2-s2.0-84933564176 (Scopus ID)
Tillgänglig från: 2015-05-28 Skapad: 2015-05-28 Senast uppdaterad: 2019-05-14Bibliografiskt granskad
Flensner, G. (2014). Det vetenskapliga ämnet (2.ed.). In: Dahlborg-Lyckhage, Elisabeth (Ed.), Att bli sjuksköterska: en introduktion till yrke och ämne (pp. 85-106). Lund: Studentlitteratur AB
Öppna denna publikation i ny flik eller fönster >>Det vetenskapliga ämnet
2014 (Svenska)Ingår i: Att bli sjuksköterska: en introduktion till yrke och ämne / [ed] Dahlborg-Lyckhage, Elisabeth, Lund: Studentlitteratur AB, 2014, 2., s. 85-106Kapitel i bok, del av antologi (Övrig (populärvetenskap, debatt, mm))
Ort, förlag, år, upplaga, sidor
Lund: Studentlitteratur AB, 2014 Upplaga: 2.
Nationell ämneskategori
Omvårdnad
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
urn:nbn:se:hv:diva-7608 (URN)978-91-44-08978-2 (ISBN)
Tillgänglig från: 2015-05-28 Skapad: 2015-05-28 Senast uppdaterad: 2015-12-22Bibliografiskt granskad
Organisationer
Identifikatorer
ORCID-id: ORCID iD iconorcid.org/0000-0001-8017-0998

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