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  • 1.
    Andersson, Sofia
    et al.
    Umeå University.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital.
    Lindqvist, Olav
    Umeå University;Karolinska Institutet.
    Furst, Carl-Johan
    Lund University.
    Brännström, Margareta
    Umeå University;University of Gothenburg.
    Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 5, p. 1304-1312Article in journal (Refereed)
    Abstract [en]

    Context. Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.& para;& para;Objectives. The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.& para;& para;Methods. The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N 22,855). Univariate and multiple logistic regression analyses were conducted.& para;& para;Results. Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.& para;& para;Conclusion. Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  • 2.
    Axelsson, Lena
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Sophiahemmet.
    Alvariza, Anette
    Ersta Sköndal University College;Dalen Hospital.
    Lindberg, Jenny
    Lund University;Skåne University Hospital.
    Ohlen, Joakim
    University of Gothenburg;Sahlgrenska Acadadmy.
    Håkanson, Cecilia
    Sophiahemmet.
    Reimertz, Helene
    Reg Kronoberg.
    Furst, Carl-Johan
    Lund University;Reg Skåne.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital.
    Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244Article in journal (Refereed)
    Abstract [en]

    Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  • 3.
    Ekstedt, Mirjam
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
    Rustoen, Tone
    Oslo Univ Hosp, Norway;Univ Oslo, Norway.
    Factors That Hinder and Facilitate Cancer Patients' Knowledge About Pain Management-A Qualitative Study2019In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 57, no 4, p. 753-760Article in journal (Refereed)
    Abstract [en]

    Context. Pain management education may improve pain control for some patients, whereas individual differences exist. Objectives. To evaluate possible critical components, facilitators, and hindrances for improved knowledge about pain management, in not hospitalized adult oncology patients with pain from bone metastasis participating in a pain management intervention. Methods. This substudy is a qualitative evaluation of the PRO-SELF Pain Control Program, tested in a randomized controlled trial. During six weeks, 87 participants in the intervention group received tailored coaching encounters by a trained oncology nurse. Three encounters for each patient were audio recorded. The encounter between patient's with the largest (n = 12) and lowest (n = 8) change in knowledge about pain management from before to after the intervention was transcribed verbatim and analyzed with qualitative content analysis. Results. The critical components of the intervention were repetition of information, struggling with resistance, use of peer experiences, and keeping track of variations. Facilitators of improvement were patients' trust and preparedness to try new procedures, the patient's self-awareness and body awareness, and taking active role in own care. Difficulties in processing complex information, culturally conditioned behaviors, fear, and lack of knowledge were the most important barriers to the success of the intervention. Conclusion. Education in pain management in cancer patients requires repeated information, allowing time for overcoming resistance related to dysfunctional beliefs and fear. To facilitate the patient's involvement in their pain management, tailored and person-centered education is needed. (C) 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  • 4.
    Hagell, Peter
    et al.
    Kristianstad University.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College ; Capio Palliative Care Unit.
    Westergren, Albert
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Ersta Sköndal Bräcke University College ; Kalmar County Hospital.
    Assessment of Burden Among Family Caregivers of People With Parkinson's Disease Using the Zarit Burden Interview2017In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, no 2, p. 272-278Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Previous studies have supported the psychometric properties of the 22-Item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson's disease (PD). However, its short forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.

    OBJECTIVES: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.

    METHODS: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age 69.6 years) of a local Swedish PD society branch were analyzed according to classical test theory methods based on polychoric/polyserial correlations.

    RESULTS: Missing item responses were ≤ 5%. Corrected item-total correlations were ≥ 0.42 and floor/ceiling effects were <20%, besides for the briefest (4- and 1-item) short forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (area under the curve, 0.91-0.98) relative to the full ZBI-22.

    CONCLUSION: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or ZBI-12 is suggested for use; other short forms can be used when caregiver burden is of less central focus or for clinical screening.

  • 5.
    Henriksson, Anette
    et al.
    Ersta Sköndal Univ Coll.
    Hudson, Peter
    Univ Melbourne, Australia.
    Ohlen, Joakim
    Ersta Sköndal Univ Coll.
    Thomas, Kristina
    Univ Melbourne, Australia.
    Holm, Maja
    Ersta Sköndal Univ Coll.
    Carlander, Ida
    Karolinska Inst.
    Hagell, Peter
    Kristianstad Univ.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Use of the Preparedness for Caregiving Scale in Palliative Care: A Rasch Evaluation Study2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 50, no 4, p. 533-541Article in journal (Refereed)
    Abstract [en]

    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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