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  • 1.
    Axelsson, Lena
    et al.
    Linnéuniversitetet, Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lindberg, Jenny
    Lunds universitet, Skånes universitetssjukhus.
    Öhlén, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Sophiahemmet högskola.
    Reimertz, Helene
    Region Kronoberg.
    Fürst, Carl-Johan
    Lunds universitet, Region Skåne.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life.2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244, article id S0885-3924(17)30494-3Article 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.

  • 2.
    Dussel, Veronica
    et al.
    USA.
    Kreicbergs, Ulrika
    Karolinska institutet. Dana-Farber Cancer Institute, Boston, USA..
    Hilden, Joanne M
    USA.
    Watterson, Jan
    USA.
    Moore, Caron
    USA.
    Turner, Brian G
    USA.
    Weeks, Jane C
    USA.
    Wolfe, Joanne
    USA.
    Looking beyond where children die: Determinants and effects of planning a child's location of death.2009In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 37, no 1, p. 33-43Article in journal (Refereed)
    Abstract [en]

    While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.

  • 3.
    Hagell, Peter
    et al.
    Högskolan Kristianstad.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Westergren, Albert
    Högskolan Kristianstad.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet, Länssjukhuset i Kalmar.
    Assessment of burden among family caregivers of people with Parkinson's disease using the Zarit Burden Interview.2017In: 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 analysed 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 (AUC, 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 -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.

  • 4. Henoch, Ingela
    et al.
    Danielson, Ella
    Strang, Susann
    Browall, Maria
    Melin-Johansson, Christina
    Göteborgs universitet.
    Training intervention for health care staff in the provision of existential support to patients with cancer: a randomized, controlled study.2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 6, p. 785-94, article id S0885-3924(13)00190-5Article in journal (Refereed)
    Abstract [en]

    CONTEXT: When a patient receives a cancer diagnosis, existential issues become more compelling. Throughout the illness trajectory, patients with cancer are cared for in oncology wards, by home care teams or in hospices. Nurses working with these patients are sometimes aware of the patients' existential needs but do not feel confident when discussing these issues.

    OBJECTIVES: To determine the effects of a training intervention, where the focus is on existential issues and nurses' perceived confidence in communication and their attitude toward caring for dying patients.

    METHODS: This was a randomized, controlled trial with a training intervention comprising theoretical training in existential issues combined with individual and group reflection. In total, 102 nurses in oncology and hospice wards and in palliative home care teams were randomized to a training or non-training group. Primary outcomes, confidence in communication, and attitude toward the care of dying patients were measured at baseline, immediately after the training, and five to six months later.

    RESULTS: Confidence in communication improved significantly in the training group from baseline (before the training) to both the first and second follow-up, that is, immediately after the training and five months later. The attitude toward caring for the dying did not improve in the training group.

    CONCLUSION: This study shows that short-term training with reflection improves the confidence of health care staff when communicating, which is important for health care managers with limited resources. Further studies are needed to explore how patients experience the communication skills of health care staff after such training.

  • 5.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hudson, Peter
    Australien.
    Öhlen, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Thomas, Kristina
    Australien.
    Holm, Maja
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Karolinska institutet.
    Hagell, Peter
    Högskolan Kristianstad.
    Årestedt, Kristofer
    Linneuniversitetet.
    Use of the Preparedness for Caregiving Scale in Palliative Care: A Rasch Evaluation Study.2015In: 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.

  • 6. Kenne Sarenmalm, Elisabeth
    et al.
    Öhlén, Joakim
    Göteborgs universitet.
    Jonsson, T
    Gaston-Johansson, F
    Coping with recurrent breast cancer: predictors of distressing symptoms and health-related quality of life2007In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 34, no 1, p. 24-39Article in journal (Refereed)
    Abstract [en]

    Little is known about how postmenopausal women with recurrent breast cancer cope with distressing symptoms and which factors predict health-related quality of life (HRQOL). In the present study, 56 consecutively enrolled patients completed questionnaires measuring symptom occurrence, coping capacity, coping efforts, and HRQOL at the time of recurrence. Results from this study illustrate that women with recurrent breast cancer suffer from multiple, concurrent, and interrelated symptoms of illness, anxiety, depression, and fatigue. Highly prevalent symptoms are lack of energy, difficulty sleeping, pain, worrying, problems with sexual interest, feeling sad, and dry mouth. The most frequently occurring symptom is problem with sexual interest, and the most severe symptom is worrying. The most distressing symptom experienced is pain. The majority of the women report 10–23 symptoms. Women who experience multiple symptoms also report higher levels of symptom distress. The experience of distressing symptoms is predicted by coping capacity, and the coping efforts experienced predict HRQOL. Patients with lower coping capacity report higher prevalence of symptoms, experience higher levels of distress, and experience worse perceived health, which in turn may decrease their HRQOL. To help women manage recurrent breast cancer, it is important to use multidimensional measurement to identify, evaluate, and treat distressing symptoms, and not assess single symptoms only. Care must be based upon the awareness of critical factors that exacerbate vulnerability to distress, as well as the ability to adapt to a recurrent breast cancer disease.

  • 7.
    Rosenberg, Abby R
    et al.
    USA.
    Postier, Andrea
    USA.
    Osenga, Kaci
    USA.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Neville, Bridget
    USA.
    Dussel, Veronica
    USA, Argentina.
    Wolfe, Joanne
    USA.
    Long-term psychosocial outcomes among bereaved siblings of children with cancer.2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 49, no 1, p. 55-65Article in journal (Refereed)
    Abstract [en]

    CONTEXT: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.

    OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes.

    METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).

    RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals.

    CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.

  • 8.
    Öhlén, Joakim
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Russell, Lara
    Kanada.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Lunds universitet, Karolinska institutet .
    Fürst, Carl Johan
    Lunds universitet, Karolinska institutet .
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet.
    Sawatzky, Richard
    Kanada.
    Variations in care quality outcomes of dying people: Latent class analysis of an adult national register population.2017In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 53, no 1, p. 13-24Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Symptom relief is a key goal of palliative care. There is a need to consider complexities in symptom relief patterns for groups of people in order to understand and evaluate symptom relief as an indicator of quality of care at end of life.

    OBJECTIVES: The aims of this study were to distinguish classes of patients who have different symptom relief patterns during the last week of life and to identify predictors of these classes in an adult register population.

    METHODS: In a cross-sectional retrospective design, data was used from 87,026 decedents with expected deaths registered in the Swedish Register of Palliative Care in 2011 and 2012. Study variables were structured into patient characteristics, and processes and outcomes of quality of care. A latent class analysis was used to identify symptom relief patterns. Multivariate multinomial regression analyses were used to identify predictors of class membership.

    RESULTS: Five latent classes were generated: "relieved pain", "relieved pain and rattles", "relieved pain and anxiety", "partly relieved shortness of breath, rattles and anxiety" and "partly relieved pain, anxiety and confusion". Important predictors of class membership were age, sex, cause of death, and having someone present at death, individual PRN prescriptions and expert consultations.

    CONCLUSION: Inter-individual variability and complexity in symptom relief patterns may inform quality of care and its evaluation for dying people across care settings.

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