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  • Liljeroos, Maria (författare)
  • Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
  • 2017
  • Doktorsavhandling (övrigt vetenskapligt)abstract
    • Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
  • Löfqvist, C., et al. (författare)
  • Mobility and mobility-related participation outcomes of powered wheelchair and scooter interventions after 4-months and 1-year use
  • 2012
  • Ingår i: Disability and Rehabilitation. - : Informa Healthcare. - 1748-3107 .- 1748-3115. ; 7:3, s. 211-218
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: The aim was to investigate outcomes of powered wheelchair and scooter interventions after 4-months and 1-year use regarding need for assistance when moving around, frequency of mobility-related participation, easiness/difficulty in mobility during participation, and number of participation aspects performed in everyday life.METHOD: The study was a prospective cohort study, using an instrument focusing on mobility-related participation outcomes of mobility device interventions (NOMO 1.0), at baseline, after 4-months and 1-year use.RESULTS: The results show that the outcomes in terms of participation frequency and easiness in mobility occur in a short time perspective, and that the effects remained stable at 1-year follow-up. The frequency of going for a walk increased most prominently (26%). Even though the majority of the participation aspects were not performed, more often they became easier to perform: 56-91% found that shopping, walking and visiting family/friends were easier. Moreover, independence outdoors and indoors increased.CONCLUSIONS: This small study provides knowledge about the outcomes of powered wheelchairs and scooters in terms of mobility and mobility-related participation in real-life situations. The study supports results from former studies, but even so, larger studies are required in order to provide evidence for the effectiveness of powered wheelchairs and scooters. [Box: see text].
  • Manchaiah, Vinaya, et al. (författare)
  • Problems and Life Effects Experienced by Tinnitus Research Study Volunteers : An Exploratory Study Using the ICF Classification
  • 2018
  • Ingår i: Journal of american academy of audiology. - Reston, VA, United States : American Academy of Audiology. - 1050-0545 .- 2157-3107. ; 29:10, s. 936-947
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Tinnitus is one of the most distressing hearing-related symptoms. It is often associated with a range of physiological and psychological complications, such as depression, anxiety, and insomnia. Hence, approaching tinnitus from a biopsychological perspective may be more appropriate than from purely a biomedical model.Objective: The present studywas aimed at determining the relationship between tinnitus and the problems and life effects experienced by UK-based tinnitus research study volunteers. Open-ended questions were used. Responses were classified using the International Classification of Functioning, Disability and Health (ICF) framework to understand the impact of tinnitus in a multidimensional manner using a biopsychosocial perspective.Research Design: A cross-sectional survey design was used.Study Sample: Study sample included a sample of 240 adults with tinnitus who were interested in undertaking an Internet-based intervention for tinnitus.Data Collection and Analysis: The data were collated using two open-ended questions. The first focused on problems related to having tinnitus and the second to life effects as a result of tinnitus. Responses were analyzed using a simplified content analysis approach to link concepts to ICF categories in accordance with established linking rules. A Wilcoxon signed-rank test was performed to compare the number of responses between the two questions. The most frequent responses related to body function involved ‘‘emotional functions’’ (b152), ‘‘sleep functions’’ (b134), ‘‘hearing functions’’ (b230), ‘‘sustaining attention’’ (b1400), and ‘‘energy level’’ (b1300). For activity limitations and participation restrictions they were ‘‘communicating with—receiving—spokenmessages’’ (d310), ‘‘socialization’’ (d9205), ‘‘handling stress and other psychological demands’’ (d240), and ‘‘recreation and leisure’’ (d920). The most frequently occurring responses related to environmental factors were ‘‘sound intensity’’ (e2500), ‘‘sound quality’’ (e2501), and ‘‘general products and technology for communication’’ (e1250). ‘‘Coping styles’’ was the most frequently occurring personal factor.Conclusions: The study highlights the use of open-ended questions in gathering useful information about the impact of tinnitus. The responses coded to ICF show that tinnitus impacts many domains, not only particularly body function, but also activity limitations and participation restrictions. The results demonstrate the heterogeneous nature of the impact of tinnitus on people affected.Results: There were 764 responses related to problems identified, 797 responses associated with life effects due to tinnitus, and 37 responses that did not fit into any ICF category. No significant differences were observed in the number of responses between the two questions. In addition, no significant association between the number of responses reported and demographic variables was found. Most of the problems and life effects experienced by tinnitus sufferers were related to body function, followed by activity limitations, and participation restrictions. Only a few responses were related to environmental and personal factors.
  • Ekstrand, Elisabeth, et al. (författare)
  • Test-Retest Reliability Of The Life Satisfaction Questionnaire (LISAT-11) And Association Between Items In Individuals With Chronic Stroke
  • 2018
  • Ingår i: Journal of Rehabilitation Medicine. - : FOUNDATION REHABILITATION INFORMATION. - 1650-1977 .- 1651-2081. ; 50:8, s. 713-718
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To evaluate the test-retest reliability of the Life Satisfaction Questionnaire (LiSat-11) and the association between items in individuals with chronic stroke. Design: Test-retest design. Subjects: Forty-five individuals (mean age 65 years) with mild to moderate disability at least 6 months post-stroke. Methods: LiSat-11, which includes 1 global item "Life as a whole" and 10 domain-specific items, was rated on 2 occasions, one week apart. Test-retest reliability was evaluated by kappa statistics, the percent agreement (PA) and the Svensson rank-invariant method. The association between items was evaluated with the Spearman's rank correlation coefficient (rho). Results: The kappa coefficients showed good to excellent agreement (0.59-0.97) and the PA <= 1 point was high (> 89%) for all items. According to the Svensson method, a small systematic disagreement was found for "Partner relationship". The other items showed no systematic or random disagreements. All domain-specific items, except one ("Sexual life") were significantly correlated with "Life as a whole" (rhos 0.29-0.80). Conclusion: LiSat-11 is considered reliable and can be recommended for assessing life satisfaction after stroke. The association between items indicates that LiSat-11 measures various aspects that can impact on an individual's life satisfaction.
  • Jalmsell, Li, et al. (författare)
  • On the child's own initiative : parents communicate with their dying child about death
  • 2015
  • Ingår i: Death Studies. - 0748-1187 .- 1091-7683. ; 39:2, s. 111-117
  • Tidskriftsartikel (refereegranskat)abstract
    • Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
  • Jarl, Gustav, et al. (författare)
  • A model to facilitate implementation of the International Classification of Functioning, Disability and Health into prosthetics and orthotics
  • 2018
  • Ingår i: Prosthetics and orthotics international. - London, United Kingdom : Sage Publications. - 0309-3646 .- 1746-1553. ; 42:5, s. 468-475
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The International Classification of Functioning, Disability and Health is a classification of human functioning and disability and is based on a biopsychosocial model of health. As such, International Classification of Functioning, Disability and Health seems suitable as a basis for constructing models defining the clinical P&O process. The aim was to use International Classification of Functioning, Disability and Health to facilitate development of such a model. Proposed model: A model, the Prosthetic and Orthotic Process (POP) model, is proposed. The Prosthetic and Orthotic Process model is based on the concepts of the International Classification of Functioning, Disability and Health and comprises four steps in a cycle: (1) Assessment, including the medical history and physical examination of the patient. (2) Goals, specified on four levels including those related to participation, activity, body functions and structures and technical requirements of the device. (3) Intervention, in which the appropriate course of action is determined based on the specified goal and evidence-based practice. (4) Evaluation of outcomes, where the outcomes are assessed and compared to the corresponding goals. After the evaluation of goal fulfilment, the first cycle in the process is complete, and a broad evaluation is now made including overriding questions about the patient's satisfaction with the outcomes and the process. This evaluation will determine if the process should be ended or if another cycle in the process should be initiated.CONCLUSION: The Prosthetic and Orthotic Process model can provide a common understanding of the P&O process. Concepts of International Classification of Functioning, Disability and Health have been incorporated into the model to facilitate communication with other rehabilitation professionals and encourage a holistic and patient-centred approach in clinical practice. Clinical relevance The Prosthetic and Orthotic Process model can support the implementation of International Classification of Functioning, Disability and Health in P&O practice, thereby providing a common understanding of the P&O process and a common language to facilitate communication with other rehabilitation professionals.
  • Meesters, Jorit, et al. (författare)
  • Goal-setting in Multidisciplinary Team Care for Patients with Rheumatoid Arthritis: An International Multi-centre Evaluation of the Contents Using the International Classification of Functioning, Disability and Health as a Reference
  • 2013
  • Ingår i: Journal of Rehabilitation Medicine. - Uppsala : Taylor & Francis. - 1651-2081. ; 45:9, s. 888-899
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To make a cross-cultural comparison of the contents of rehabilitation goals of patients admitted for rehabilitation and to compare the contents with the comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis, by linking their contents to the ICF. Patients: A random sample of 80 patients with rheumatoid arthritis was retrieved from rehabilitation clinics in 4 countries. Methods: Rehabilitation goals were extracted from the medical records and linked to the ICF using standardized linking rules. Results: A total of 495 rehabilitation goals were identified and linked to 952 ICF codes, resulting in 151 unique ICF codes. Two-hundred and seventy-five (29%) of the 952 ICF codes were related to "Body Functions" (b-codes), 80 (8%) to "Body Structures" (s-codes), 419 (44%) to "Activities and Participation" (d-codes) and 178 (19%) to "Environmental Factors" (e-codes). Thirty-five of the 151 unique ICF codes (23%) were not in the comprehensive ICF Core Set for rheumatoid arthritis, whereas 23 of the ICF codes in this Core Set (24%) were not in the rehabilitation goals. Conclusion: The goals set in a team rehabilitation setting for patients with rheumatoid arthritis are related to all ICF components, with "Activities and Participation" being the most frequently addressed. The contents of the goals are, to a considerable extent, covered by the comprehensive ICF Core Set for rheumatoid arthritis, but additional evaluation is required before the ICF Core Set is used as a rehabilitation tool in rheumatoid arthritis.
  • Tegler, Helena (författare)
  • Social Interaction Involving Non-speaking Children with Severe Cerebral Palsy and Intellectual Disability : The role of communication partners and speech-generating devices
  • 2020
  • Doktorsavhandling (övrigt vetenskapligt)abstract
    • The overall aim of this thesis was to investigate the use of speech-generating device (SGD)-mediated interaction with children with anarthria, severe physical impairments and intellectual disabilities due to cerebral palsy with a focus on partner strategies and social practices.Studies I and II were cross-sectional studies that used questionnaires, which were analyzed using descriptive statistics and directed content analysis. In Study I, speech and language pathologists’ (SLPs) practices and perceptions of communication partner training in SGD-mediated interaction were examined. In Study II, communication partners’ (i.e., caregivers’, teachers’, and assistants’) practices and perceptions of communication partner training in SGD-mediated interaction were examined.Studies III and IV were qualitative observational studies that used video recordings, which were analyzed with ethnomethodological conversation analysis. Study III investigated how multiparty classroom interaction was organized when one of the students used an eye-gaze accessed SGD. Study IV explored the social actions that mobilized SGD-mediated responses when the child was a beginner user of the eye-gaze accessed SGD.The findings suggest the following: all participants (i.e., SLPs, caregivers, teachers, and assistants) considered that SGD-mediated interaction was beneficial for the children. SLPs were important providers but they provided few training sessions and used mostly verbal instructions. Communication partners could benefit from more support from SLPs and SLPs should consider using additional instructional approaches such as feedback and role-play when coaching communication partners in SGD-mediated interaction. Children could interact with their eye-gaze accessed SGDs in multiparty classroom interactions provided that the turn-taking in Initiation-Response-Evaluation (IRE) sequences was applied and that the teacher or the assistant provided contingent on-screen gaze and deictic scaffolding actions. Communication partners to children who were beginner users of an eye-gaze accessed SGD may need to produce repeated turn transition relevance places and use contingent on-screen gaze and deictic practices to scaffold an SGD-mediated response.This thesis brings new knowledge to the field of SGD-mediated interaction. Partner strategies that can enhance children’s linguistic skills were seldom used in multiparty classroom interaction, but other social practices were used, which facilitated social inclusion and participation.
  • Bäckryd, Emmanuel, et al. (författare)
  • Chronic pain patients can be classified into four groups: Clustering-based discriminant analysis of psychometric data from 4665 patients referred to a multidisciplinary pain centre (a SQRP study)
  • 2018
  • Ingår i: PLoS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203 .- 1932-6203. ; 13:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective To subgroup chronic pain patients using psychometric data and regress the variables most responsible for subgroup discrimination. Design Cross-sectional, registry-based study. Setting and subjects Chronic pain patients assessed at a multidisciplinary pain centre between 2008 and 2015. Methods Data from the Swedish quality registry for pain rehabilitation (SQRP) were retrieved and analysed by principal component analysis, hierarchical clustering analysis, and partial least squares-discriminant analysis. Results Four subgroups were identified. Group 1 was characterized by low "psychological strain", the best relative situation concerning pain characteristics (intensity and spreading), the lowest frequency of fibromyalgia, as well as by a slightly older age. Group 2 was characterized by high "psychological strain" and by the most negative situation with respect to pain characteristics (intensity and spreading). Group 3 was characterized by high "social distress", the longest pain durations, and a statistically higher frequency of females. The frequency of three neuropathic pain conditions was generally lower in this group. Group 4 was characterized by high psychological strain, low "social distress", and high pain intensity. Conclusions The identification of these four clusters of chronic pain patients could be useful for the development of personalized rehabilitation programs. For example, the identification of a subgroup characterized mainly by high perceived "social distress" raises the question of how to best design interventions for such patients. Differentiating between clinically important subgroups and comparing how these subgroups respond to interventions is arguably an important area for further research.
  • Holmqvist, Gärd Marie Louise, et al. (författare)
  • Women’s experiences of change through art therapy
  • Ingår i: Arts and Health. - Abingdon : Taylor & Francis. - 1753-3015 .- 1753-3023. ; 9:3, s. 199-212
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Art therapy is based on the conception that image making in a therapeutic context may facilitate processes of change. Methods: A semi-structured interview with focus on the image was conducted with 17 women in order to explore change, after which a qualitative content analysis was performed. Results: The women experienced internal change as a sudden, unexpected turning point or as a more gradual process, although some reported no internal change whatsoever. Five themes reflecting the women’s experiences of what was important for internal change emerged: Trust in the therapist, Belief in the method, Creative impulse, Meaning of the image and The art therapy process. Conclusions: Art therapy may contribute to change in the sense of moving from an inadequate to a healthier state. Even when art therapy does not lead to internal change it may be supportive and provide short-term help in everyday life.
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