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  • 1.
    Asaba, Eric
    et al.
    Karolinska institutet; Stiftelsen Stockholms sjukhem; Lunds universitet.
    Aldrich, Rebecca M.
    University of Southern California, USA.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Ekstam, Lisa
    Lunds universitet.
    Farias, Lisette
    Karolinska institutet.
    Challenging conceptualisations of work: Revisiting contemporary experiences of return to work and unemployment2021In: Journal of Occupational Science, ISSN 1442-7591, E-ISSN 2158-1576, Vol. 28, no 1, p. 81-94Article in journal (Refereed)
    Abstract [en]

    This article draws on empirically derived illustrations of return to work and unemployment to critically explore how a narrow understanding of work pervades contemporary social policies and programmes. This is particularly relevant in economic and labour market transitions aligned with neoliberalism that individualise the social problem of unemployment and thus restrict occupational possibilities related to work. An overview of how work and related concepts have been conceptualised in occupational science scholarship is presented. After describing the theoretical orientation of the paper, three illustrations derived from a secondary analysis of data from projects conducted in Sweden and the United States are presented. The three empirically grounded illustrations are integrated with theory to highlight tensions between the politically informed structures that shape social policies and programmes and the individual experiences of work, unemployment, and return to work that users and providers of these programmes communicate. By asserting that success in work-related placement programmes is not synonymous with meaningful employment, we attempt to heighten awareness of the potential risks associated with a reliance on measuring work by merely being in paid formal employment.

  • 2.
    Bendt, Martina
    et al.
    Rehab Station Stockholm; Karolinska institutet.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Riedel, Dorothee
    Stiftelsen Spinalis, Stockholm.
    Hagman, Göran
    Karolinska institutet.
    Hultling, Claes
    Karolinska institutet; Stiftelsen Spinalis, Stockholm.
    Franzén, Erika
    Karolinska institutet; Karolinska universitetssjukhuset; Stockholms sjukhem.
    Eriksson, Mats
    Örebro universitet.
    Seiger, Åke
    Rehab Station Stockholm; Karolinska institutet.
    Adults with spina bifida: A cross-sectional study of health issues and living conditions.2020In: Brain and Behavior, ISSN 2162-3279, E-ISSN 2162-3279, Vol. 10, no 8, p. 1-12, article id brb3.1736Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To describe health issues and living conditions in a cohort of adults living with Spina bifida.

    MATERIAL AND METHODS: A cross-sectional study was conducted by a multidisciplinary team. Adults with spina bifida (n = 219) were invited to participate. One-hundred-and-ninety-six persons (104 women and 92 men; 18-73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.

    RESULTS: There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals >46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.

    CONCLUSIONS: This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow-up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow-up services and social support throughout life.

  • 3.
    Ehrén, Ingrid
    et al.
    Rehab Station Stockholm; Karolinska universitetssjukhuset; Karolinska institutet.
    Hagman, Göran
    Karolinska institutet.
    Lindbo, Lena
    Rehab Station Stockholm.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Bendt, Martina
    Rehab Station Stockholm; Karolinska Institutet .
    Seiger, Åke
    Rehab Station Stockholm; Karolinska institutet.
    Cognitive challenges in persons with spina bifida: Bearing on urological dysfunctions?2020In: Neurourology and Urodynamics, ISSN 0733-2467, E-ISSN 1520-6777, Vol. 39, no 8, p. 2139-2145Article in journal (Refereed)
    Abstract [en]

    AIM: To evaluate if adult persons with spina bifida (SB) who have urinary tract complications have cognitive difficulties that can be identified by neuropsychological tests.

    METHODS: All individuals with SB ≥ 18 years of age registered at a regional outpatient clinic (n = 219) were invited, of which, 154 persons were included. Neuropsychological assessment of their cognitive status was performed with Wechsler Adult Intelligence Scale®-Fourth Edition: Coding, Block design, Arithmetic's, FAS (word generation), Rey Auditory Verbal Test for learning, and delayed recall 30 min. Bladder and bowel function were assessed with questions used by the Nordic Spinal Cord Injury Registry (NSCIR) in structured interviews, by questionnaires, and by chart reviews.

    RESULTS: Average neuropsychological test results for this SB population was shown to be approximately 1 SD under the median for the general population. The Coding test showed significantly lower test results as compared with the whole SB group in persons with urinary tract complications, especially urinary tract infections, reduced kidney function, dependent emptying of the bladder, and the bowel and accidental bowel leakage. The Arithmetic's test showed a significant difference between subgroups in all parameters except reduced kidney function whereas the other neuropsychological tests were significantly correlated with some but not all urological parameters.

    CONCLUSION: We propose neuropsychological testing with primarily two tests to find those persons with SB who, due to cognitive challenges, might need extra support to minimize urological complications.

  • 4.
    Ehrén, Ingrid
    et al.
    Rehab Station Stockholm; Karolinska universitetssjukhuset; Karolinska institutet.
    Lindbo, Lena
    Rehab Station Stockholm.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Bendt, Martina
    Rehab Station Stockholm; Karolinska institutet.
    Seiger, Åke
    Rehab Station Stockholm; Karolinska Institutet.
    Voiding conditions, renal and bowel function in a cohort of adults with spina bifida2020In: Neurourology and Urodynamics, ISSN 0733-2467, E-ISSN 1520-6777, Vol. 39, no 6, p. 1796-1802Article in journal (Refereed)
    Abstract [en]

    AIM: To map voiding patterns, degree of continence, use of drugs for voiding disorders, kidney function and surgical interventions but also the bowel function in a near-total regional cohort of adults with spina bifida aged more than or equal to 18 years.

    METHODS: All individuals more than or equal to 18 years of age with spina bifida registered at a regional outpatient clinic (n = 219) were invited to participate, of which 196 persons were included. Bladder and bowel function were assessed according to questions used by the Nordic Spinal Cord Injury Registry by structured interviews and questionnaires in combination with review of patient charts including kidney function.

    RESULTS: Twenty percent of the patients voided spontaneously. Fifty-four percent used clean intermittent catherization (CIC) and of these, 14% had also undergone augmentation of the bladder and/or implantation of an artificial sphincter or sling, 23% had undergone major urological surgery, and 3% had an indwelling catheter. Seventeen percent of patients voiding spontaneously or using CIC reported total continence but as many as 36% reported daily leakage. Anticholinergics was the most common drug, used by 21% in the total cohort. About 13% of the patients had a reduced kidney function but only 1.5% had end stage renal failure. Seventy-three percent had problems emptying the bowel and 18% experienced fecal leakage weekly or even daily.

    CONCLUSION: We found a large variation in problems with bladder and bowel function in this adult group of persons with spina bifida. A structured customized program for follow-up seems necessary to optimize their health status in these areas.

  • 5.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Örebro universitet, Institutionen för hälsovetenskaper.
    Adults with Spina bifida: voices from everyday life and exploration of living conditions2020Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to generate knowledge about living with Spina bifida, by mapping the condition and together with the adults with Spina bifida explore their living conditions and experiences in everyday life. Methods Study I was a quantitative study with a cross-sectional design. In Study II, individual experiences of daily life were explored by deep interviews using a reflective lifeworld approach. Study III had a participatory approach including five members of a photovoice group who met for eight sessions. Photographs taken by the members served as a starting point for the dialogue about what was of interest in their daily life. A narrative analysis was conducted by the researchers, incorporating the analysis the group did together. Study IV focused on alignment with the methodology in which photovoice is grounded. By returning to the ideological cornerstones of photovoice, the empirical experiences from Study III and examples from the literature were elaborated through processes within photovoice. The findings show that those adults with Spina bifida who were >46 years old had less complex medical conditions and better physical and cognitive functions, and had attained a higher level of education. The main theme in Study II was presented as “The contradictory path towards wellbeing in daily life.” In Study III, the members’ experiences in everyday life showed that many solutions offered by society were “An adaptation for us, but it works for no one.” The findings are further presented under three themes: “Accessibility – a never-ending project,” “Tensions of a normative view” and “Power to influence.” By focusing on action and narrative in Study IV, it is shown that dialogue, action, and interaction are important aspects of using photovoice. In conclusion, not all adult persons receive the support they need in everyday life, something future generations of adult persons with Spina bifida may have a higher need for. The stories and experiences of adults with Spina bifida in this thesis paint a history of not being asked, concerning their own situation. This shows that there is insufficient integration of the persons’ experiences in society’s efforts to plan for, and support, these individuals. The photovoice method was feasible for this group, providing opportunity for being part of dialogue, action, and interaction.

  • 6.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Photovoice: Action & dialogue in the center of participation & co-creation of narratives2021Conference paper (Other academic)
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    Conference programme
  • 7.
    Gabrielsson, Hanna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Örebro universitet.
    Cronqvist, Agneta
    Marie Cederschiöld University, Department of Health Care Sciences.
    Asaba, Eric
    Karolinska institutet; Stockholms sjukhem.
    Photovoice revisited: Dialogue and Action as Pivotal2022In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 32, no 5, p. 814-822, article id 10497323221077300Article in journal (Refereed)
    Abstract [en]

    Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.

  • 8.
    Gabrielsson, Hanna
    et al.
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Hjorth, Elin
    Marie Cederschiöld University, Department of Health Care Sciences.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences.
    Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering2023In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, no 1, p. 165-178Article, review/survey (Refereed)
    Abstract [en]

    A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

    Download full text (pdf)
    fulltext
  • 9.
    Gabrielsson, Hanna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Örebro universitet; Rehab Station Stockholm.
    Hultling, Claes
    Stiftelsen Spinalis; Sophiahemmet högskola; Karolinska institutet .
    Cronqvist, Agneta
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Asaba, Eric
    Karolinska institutet; Stiftelsen Stockholms sjukhem; Lunds universitet.
    Views on everyday life among adults with spina bifida: an exploration through photovoice2020In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 15, no 1, p. 1-12, article id 1830702Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.

  • 10.
    Gabrielsson, Hanna
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Stiftelsen Spinalis.
    Karlberg Traav, Malin
    Ersta Sköndal University College, Department of Health Care Sciences. Universitetssjukhuset Örebro.
    Cronqvist, Agneta
    Ersta Sköndal University College, Department of Health Care Sciences.
    Reflections on Health of Young Adults with Spina Bifida: The Contradictory Path towards Well-Being in Daily Life2015In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 5, no 4, p. 303-312Article in journal (Refereed)
    Abstract [en]

    Background: An individual with SB needs to deal with long standing illnesses and is often viewed as having a disability that needs to be compensated for. This medical condition is an example of malfunction of the body, though congenital, and could be seen as an outside-perspective to the individual human being. It is important that the required medical treatment is offered to an individual with SB, but such medical treatment alone would not encompass the full health spectrum for an individual in this specific situation. A question to be raised is how this specific group of individuals experience health.

    Aim: To describe the experience of daily life for young adults with SB through a theoretical lens of health.

    Method: This qualitative study was conducted using a reflective lifeworld approach with an interpretive part. In the lifeworld theory it is understood that all our doings, feelings and thoughts are experienced through the lifeworld. The interview questions were open and non-standardised.

    Findings: The main theme was formulated as The contradictory path towards well-being in daily life, and was constructed on the sub-themes: Not understanding and taking responsibility for the lower body, Having people standing behind me—not being allowed to grow up myself, Compared to people like me, I usually do well, I thought it would work out by itself, and A lack of structure in daily life.

    Conclusion: The study indicates that young adults with SB have a diminished health and well-being and that they have a contradictory path to travel towards independency which is of great concern for this group of individuals. Differences in views of independence constitute a problem and it is important for health care providers to be aware of the individuals’ perspective on independence. This notion is something that needs to be taken into account when designing support programs for these individuals.

  • 11.
    Gabrielsson, Hanna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Spinalismottagingen, Aleris Rehab Station, Stockholm.
    Riedel, Dorothee
    Stiftelsen Spinalis, Stockholm.
    Bendt, Martina
    Spinalismottagingen, Aleris Rehab Station, Stockholm; Karolinska Institutet.
    Living with Spina Bifida myelomeningocele as adults2022Other (Other academic)
    Download full text (pdf)
    Conference proceedings
  • 12.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Viktoria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Patientorganisationer som företräder riskgrupper under covid-19-pandemin: förändringar i organisation och relation till andra aktörer2021In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 38-47Article in journal (Refereed)
    Abstract [en]

    During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

    Download full text (pdf)
    fulltext
  • 13.
    Karlberg Traav, Malin
    et al.
    Universitetssjukhuset Örebro.
    Gabrielsson, Hanna
    Stiftelsen Spinalis.
    Cronqvist, Agneta
    Ersta Sköndal University College, Department of Health Care Sciences.
    Conceptions of an implemented nursing philosophy: A phenomenographic study2014In: Clinical Nursing Studies, ISSN 2324-7940, E-ISSN 2324-7959, Vol. 2, no 3, p. 86-96Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to describe how nurses conceive their work on a ward where a nursing philosophy has been systematically implemented.

    Introduction: There is no international consensus today in relation to the organizing of nursing on the basis of an established nursing theory.

    Design and method: This study has a phenomenographic methodology, with an epistemological base in life-world perspective. Data were collected through thematized interviews with nurses on a ward where a nursing philosophy has been implemented for several years.

    Result: The conceptions of working with a nursing philosophy is described in an overarching statement formulated as a movement From implicit to explicit - where openness and freedom to speak are essential based on five categories of description (conceptions): Making it happen – the manager´s significance for implementation, Integrating the philosophy within me – creating a collective platform, “Welcome to us” – a caring atmosphere, The patient’s sense of being confirmed – establishing quality of care, “Us and them” –being inside or outside.

    Conclusion: Working with an implemented nursing philosophy seemed to provide support to the nurse in day-to-day work and thereby contributes to shared values. On the basis of the results we are not able to state that the specific nursing philosophy used can be the only contribution to the experienced support.

  • 14.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Viktoria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Hjorth, Elin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Ömsesidiga hjälporganisationer i Sverige uppvisar resiliens under covid-19-pandemin2021In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 98, no 1, p. 48-58Article in journal (Refereed)
    Abstract [en]

    Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

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  • 15.
    Werhagen, Lars
    et al.
    Danderyds sjukhus.
    Gabrielsson, Hanna
    Stiftelsen Spinalis.
    Westgren, Ninni
    Karolinska sjukhuset.
    Borg, Kristian
    Danderyds sjukhus.
    Medical complication in adults with spina bifida2013In: Clinical neurology and neurosurgery (Dutch-Flemish ed. Print), ISSN 0303-8467, E-ISSN 1872-6968, Vol. 115, no 8, p. 1226-1229Article in journal (Refereed)
    Abstract [en]

    SETTING: Cohort study.

    INTRODUCTION: Spina bifida (SB) is a congenital malformation affecting the central nervous system (CNS) and is one of the most prevalent CNS disorders in children. Hydrocephalus (HC) is present in 80% of newborns with SB. The aim of the present study was to analyze the medical complications and to relate the complications to age at examination, the level of injury, AIS grade and presence of HC in adults with SB.

    MATERIALS AND METHODS: SB patients were recruited from the Spinalis out-patient clinic at the Karolinska University Hospital at their annual follow-up. The patients underwent a thorough general and neurological examination and background data including medical complications were retrieved from the medical files.

    RESULTS: 127 of 157 (82%) SB patients (114 with MMC and 13 SB occulta) with a mean age of 34 years were included. Half of the patients had a complete SCI and a lumbar level was most common. Nearly 60% of the patients had HC. 88 patients (69%) suffered from at least one medical complication. Urinary tract infection (UTI), scoliosis and pain were the most common complications found in 46%, 30% and 28% of the patients, respectively. Less common complications were epilepsy, pressure ulcers (PU) and spasticity.

    DISCUSSION: SB gives a disability including motor, sensory dysfunctions and the patients suffer from a high frequency of medical complications like UTI, scoliosis, pain, and epilepsy. Data gives basis for adequate routines for medical examination at the follow-up.

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