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- Hammarlund, Catharina Sjödahl, et al.
(författare)
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Facing and dealing with emotional turbulence : Living with newly diagnosed Parkinson's disease
- 2024
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd. - 0283-9318 .- 1471-6712. ; 38:3, s. 701-710
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION : The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. AIM : This study aimed to gain a better understanding of the impact of living with the early stages of PD. METHODS : A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min-max, 64-77) years and had been diagnosed with PD for a median of 5 (min-max, 2-12) months. Interviews were recorded and analysed using systematic text condensation. RESULTS : The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2-3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries).CONCLUSION : Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants' emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.
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- Henriksson (Alvariza), Anette, et al.
(författare)
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Use of the Preparedness for Caregiving Scale in Palliative Care : A Rasch Evaluation Study
- 2015
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 50:4, s. 533-541
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Tidskriftsartikel (refereegranskat)abstract
- Context. Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care. Objectives. The aim of this study was to evaluate the measurement properties of the original English version and a Swedish version of the Preparedness for Caregiving Scale (PCS). Methods. The sample (n = 674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected, and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model. Results. Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex was detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index. Conclusion. The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions. (C) 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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- af Sandeberg, Margareta, et al.
(författare)
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Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer
- 2010
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: The aim was to evaluate data quality and psychometric properties of an instrument for measurement of health-related quality of life: DISABKIDS Chronic Generic Module (DCGM-37) used in school-aged children with cancer. Methods: All school-children diagnosed with cancer in Sweden during a two-and-a-half year period were invited to participate in the study. Analysis was performed on combined data from two assessments, two and-a-half and five months after start of cancer treatment (n = 170). The instrument was examined with respect to feasibility, data quality, reliability and construct and criterion-based validity. Results: Missing items per dimension ranged from 0 to 5.3 percent, with a majority below three percent. Cronbach's alpha values exceeded 0.70 for all dimensions. There was support for the suggested groupings of items into dimensions for all but six of the 36 items of the DCGM-37 included in this study. The instrument discriminated satisfactorily between diagnoses reflecting treatment burden. Conclusions: The results indicate satisfactory data quality and reliability of the DCGM-37 when used in children undergoing treatment for cancer. Evaluation of construct validity showed generally acceptable results, although not entirely supporting the suggested dimensionality. Continued psychometric evaluation in a larger sample of children during and after treatment for cancer is recommended.
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- Aregger Lundh, Stefan, et al.
(författare)
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Life satisfaction in cardiac arrest survivors : A nationwide Swedish registry study
- 2023
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Ingår i: Resuscitation Plus. - : Elsevier. - 2666-5204. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionMost cardiac arrest (CA) survivors report good health and quality of life. Life satisfaction on the other hand has not yet been studied in a large scale in the CA population. We aimed to explore life satisfaction as perceived by CA survivors with three research questions addressed: (1) how do CA survivors report their life satisfaction, (2) how are different domains of life satisfaction associated with overall life satisfaction, and (3) how are demographic and medical factors associated with overall life satisfaction?MethodsThis registry study had a cross-sectional design. Life satisfaction was assessed using the 11-item Life Satisfaction checklist (LiSat-11). The sample included 1435 survivors ≥18 years of age. Descriptive statistics and binary logistic regression analyses were used.ResultsSurvivors were most satisfied with partner relation (85.6%), family life (82.2%), and self-care (77.8%), while 60.5% were satisfied with overall life. Satisfaction with psychological health was strongest associated with overall life satisfaction. Among medical and demographic factors, female sex and poor cerebral performance were associated with less overall life satisfaction.ConclusionsGenerally, CA survivors seem to perceive similar levels of overall life satisfaction as general populations, while survivors tend to be significantly less satisfied with their sexual life. Satisfaction with psychological health is of special interest to identify and treat. Additionally, female survivors and survivors with poor neurological outcome are at risk for poorer overall life satisfaction and need special attention by healthcare professionals.
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- Bala, Sidona Valentina, et al.
(författare)
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Living with persistent rheumatoid arthritis : A BARFOT study
- 2017
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 26:17-18, s. 2646-2656
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Tidskriftsartikel (refereegranskat)abstract
- Aim and objective: To describe and understand the meaning of living with persistent rheumatoid arthritis. Background: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis. Design: A descriptive design based on a hermeneutic phenomenological method was used. Methods: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method. Results: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services. Conclusions: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way. Relevance to clinical practice: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.
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- Bala, Sidona-Valentina, et al.
(författare)
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Measuring person-centered care in nurse-led outpatient rheumatology clinics
- 2018
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- BACKGROUND: Person-centered care (PCC) is a key component to effective illness management and high-quality care but conceptually underdeveloped in outpatient care settings for long-term disorders such as rheumatoid arthritis (RA), and there is a lack of instruments measuring patient perceived PCC. AIM: To conceptualize and operationalize outpatient PCC as a basis for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics. DESIGN: A conceptual outpatient PCC framework was developed based on theory and patient experiences.The resulting framework was operationalizedinto items that were tested regarding their accordancewith the theoretical framework and their measurement properties according to Rasch measurement theory (RMT) using the RUMM2030 software. RESULTS: The conceptual framework comprised five intermingled domains (personalization, shared decision-making, empowerment, communication, and social environment) that were operationalized into a 24-item PCC instrument for outpatient care in rheumatology (PCCoc/rheum). RMT analyses found items to successfully map out a quantitative continuum from lower to higher PCC levels, with generally acceptable model fit and a reliability of 0.88. Three items exhibiting multidimensionality, dysfunctional response categories, and/or unexpected hierarchical ordering were omitted. The revised PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories, and no DIF; reliability was 0.86. SUMMARY AND IMPLICATIONS: We found support for the PCCoc/rheum as a conceptually based outcome measure of patient perceived PCC. Results implied minor theoretical reconsiderations, and related scale revisions improved theoretical and clinical clarity. While in need of further testing, the PCCoc/rheum has great potential as a measure of outpatient PCC from a patient perspective.
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