| 1. |
- Alvariza, Anette, et al.
(författare)
-
A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
- 2018
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
-
Tidskriftsartikel (refereegranskat)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
|
|
| 2. |
- Alvariza, Anette, et al.
(författare)
-
Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
- 2019
-
Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)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.
|
|
| 3. |
- Alvariza, Anette, et al.
(författare)
-
Omvårdnad i livets slut
- 2019
-
Ingår i: Edberg A-K & Wijk H (Red). Omvårdnadens grunder: Hälsa och ohälsa. - Lund : Studentlitteratur AB. ; , s. 707-745, s. 707-745
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
|
|
| 4. |
- Andersson, B, et al.
(författare)
-
Being a hospice volunteer
- 2005
-
Ingår i: Palliative Medicine. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
-
Tidskriftsartikel (refereegranskat)
|
|
| 5. |
- Andersson, Birgit, et al.
(författare)
-
Being a hospice volunteer
- 2005
-
Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient. PMID: 16450877 [PubMed - indexed for MEDLINE]
|
|
| 6. |
- Andersson, Viktor, 1994, et al.
(författare)
-
Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion
- 2022
-
Ingår i: Nursing Philosophy. - : Wiley. - 1466-7681 .- 1466-769X. ; 23:3
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 7. |
|
|
| 8. |
- Anna, O'Sullivan, et al.
(författare)
-
Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness
- 2019
-
Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-191.
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)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.
|
|
| 9. |
- Axelsson, Lena, et al.
(författare)
-
Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
-
Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
-
Tidskriftsartikel (refereegranskat)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.
|
|
| 10. |
|
|
