1.
Berg, Linda, 1961, et al.
(author)
Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study
2014
In: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 8, s. 1-7
Journal article (peer-reviewed) abstract
Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
2.
Smedback, Jonas, et al.
(author)
Palliative care during the final week of life of older people in nursing homes : A register-based study
2017
In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:4, s. 417-424
Journal article (peer-reviewed) abstract
Objective: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes. Method: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics. Results: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place. Significance of results: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
3.
Alvariza, Anette, et al.
(author)
A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
2018
In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
Journal article (peer-reviewed) abstract
Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
4.
Alvariza, Anette, et al.
(author)
Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
2019
In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
Conference paper (other academic/artistic) abstract
Background: The Carer Support Needs Assessment Tool (CSNAT) was developed to identify support needs of family carers in the context of palliative care which aims to improve quality of life, not just of patients but also their families. Aims: This study aims to 1) evaluate validity and reliability of the CSNAT in a sample of Swedish family carers and nurses in a specialised palliative care context, 2) investigate associations between carer support needs and quality of life. Methods: The study was conducted in four stages I: translation of CSNAT to Swedish; II: cognitive interviews with 8 family carers and 10 nurses; III: completion of the CSNAT, Preparedness for Caregiving Scale, Caregiver Burden Scale, Quality of Life in Life Threatening Illness- Family Carer Version by 118 family carers (spouses/partners: mean age 68 years; 69 women and 45 men). Evaluation of data quality, construct validity and test-retest reliability; IV: Investigation of associations between carer support needs and qual- ity of life using linear regression analyses. Results: CSNAT items were considered relevant and useful to identify support needs and demonstrated sound psychometric properties with satisfactory data quality and few problems with missing data. All items had satisfactory test-retest reliability. Construct validity was supported, as CSNAT items correlated with caregiver burden and preparedness. Associations were found between CSNAT items and seven different domains that represent carer quality of life; carer state, patient wellbe- ing, quality of care, outlook, environment and finances. Having more support needs was associated with poorer quality of life. Conclusion: This study adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family carers in pal- liative care. Associations between carer support needs and quality of life suggests that carers’ quality of life may be improved by acknowledging and addressing their needs for support.
5.
Andersson, Viktor, 1994, et al.
(author)
Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion
2022
In: Nursing Philosophy. - : Wiley. - 1466-7681 .- 1466-769X. ; 23:3
Journal article (peer-reviewed) abstract
Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient-reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person-centredness. First, we engage with the late-modern history of the concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person-centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for.
6.
7.
Anna, O'Sullivan, et al.
(author)
Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness
2019
In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-191.
Conference paper (other academic/artistic) abstract
Background: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking in the Swedish context. Aims: This study explored bereaved family members’ satisfaction with care in several care places, during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased persons and their family members. Methods: A retrospective cross-sectional survey design using the VOICES (SF) questionnaire, descriptive statistics and logistic regression was applied. The sample was 485 family members (age range 20-90 years, 70% women) of persons who died in hospitals in two Swedish health care regions. The deceased persons (age range 27-100) died mainly of circulatory or respiratory diseases, or malignant neoplasm. Results: Of the family members 77, 3% were satisfied with all care received during the last three months of life, when added together and rated as one. The results show variations in care satisfaction between different care places and care services; 87,2 % of the bereaved family members had a high satisfaction with care in hospices, followed by hos- pitals (85,9%), district nurses (68,9%), nursing homes (63,0%), special- ized home care (60,0%) and GPs (55,6%). Spouses were more likely to be satisfied with the care than children or other family members. Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person or the bereaved family member had a higher edu- cational attainment and a length of illness before death for one year or longer. Conclusions: The satisfaction with care is influenced by the care place/ type of care service, as well as by diagnoses, length of illness, educa- tional attainment and the relationship between the deceased person and the family member.
8.
Axelsson, Lena, et al.
(author)
Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
2018
In: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
Journal article (peer-reviewed) abstract
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.
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