| 1. |
- Alvariza, Anette, et al.
(författare)
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A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
- 2018
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
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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
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| 2. |
- Alvariza, Anette, et al.
(författare)
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Family members' experiences of integrated palliative advanced home and heart failure care : a qualitative study of the PREFER intervention
- 2018
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Ingår i: Palliative & Supportive Care. - New York : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:3, s. 278-285
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.
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| 3. |
- Axelsson, Lena, et al.
(författare)
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Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support
- 2020
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Ingår i: Palliative Medicine Reports. - : Mary Ann Liebert. - 2689-2820. ; 1:1, s. 191-200
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Tidskriftsartikel (refereegranskat)abstract
- Background: The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association.Objective: To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.Methods: This prospective correlational study used unpaired t-test to compare grief in relation to preparedness for caregiving, caregiver burden, and social support. Hierarchical multiple linear regression analysis investigated moderation effects. Family caregivers were recruited from 10 palliative homecare facilities. The Anticipatory Grief Scale, Texas Revised Inventory of Grief, Preparedness for Caregiving Scale, Caregiver Burden Scale, and Multidimensional Scale of Perceived Social Support were used. Ethical approval for the study was granted by the Regional Ethical Review Board in Stockholm, Sweden.Results: In total, 128 family caregivers participated. Those with high caregiver burden scored significantly higher intensity of predeath but not postdeath grief. Caregiver burden and social support moderated the association between intensity of predeath grief and postdeath grief. There was a stronger association between predeath and postdeath grief among caregivers with low caregiver burden or low social support. Preparedness for caregiving had no moderating effect.Discussion: Attention should be directed to caregiver burden and social support during family caregiving, as these variables seem to be significant for the intensity of grief before and after the patient's death. Acknowledging predeath grief during caregiving and recognizing pre- and postdeath grief as parts of the same process are of importance in clinical practice and when designing supportive interventions.
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| 4. |
- Axelsson, Lena, et al.
(författare)
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Livskvalitet hos Närstående till personer i livets slut : Validering av The Quality of Life in Life-Threatening Illness - Family carer version
- 2022
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Konferensbidrag (refereegranskat)abstract
- Bakgrund: Självskattningsinstrumentet Quality of Life in Life Threatening Illness - Family carer version (QOLLTI-F) är utvecklat för att mäta livskvalitet hos närstående till personer i livets slut. Instrumentet är översatt till svenska och har uppvisat tillfredsställande innehållsvaliditet. Vidare validering behövs.Syfte: Att utvärdera mätegenskaper för QOLLTI-F, med fokus på begreppsvaliditet och reliabilitet, bland närstående till personer i livets slut.Metod: Studien har en tvärsnittsdesign och data samlades in vid två specialiserade hemsjukvårdsenheter i två städer i Sverige. Totalt 114 närstående (61% kvinnor, medelålder 67,5 år) besvarade en enkät bestående av bakgrundsfrågor och självskattningsinstrumenten QOLLTI-F, Caregiver Burden Scale (CBS), Preparedness for Caregiving Scale (PCS) samt Reward of Caregiving Scale (RCS). Konvergerande validitet utvärderades genom att korrelera QOLLTI-F med CBS, PCS och RCS. För att utvärdera den relativa betydelsen av QOLLTI-Fs dimensioner för närståendes övergripande livskvalitet användes multipel linjär regressionsanalys. Intern konsistens utvärderades med Cronbach’s alfa.Resultat: De allra flesta närstående hade svarat på alla frågor och hela svarsskalan från 0–10 användes för nästan alla frågor. Samtliga QOLLTI-F dimensioner förutom patientens tillstånd korrelerade som förväntat med upplevelse av påfrestning, förberedelse för att vårda och/eller egen behållning vilket stöder konvergerande validitet. Dimensionerna i QOLLTI-F förklarade tillsammans 70,5% av variationen i övergripande livskvalitet; närståendes eget tillstånd och närståendes perspektiv hade högst förklaringsvärde. Cronbach’s alfa varierade mellan 0,58–0,86.Betydelse: Självskattningsinstrumentet QOLLTI-F uppvisade goda mätegenskaper för att skatta närståendes livskvalitet i den aktuella studien. Resultaten indikerar att den övergripande frågan kan användas enskilt, speciellt när intresset är att fånga livskvalitet utifrån närståendes eget tillstånd och perspektiv.
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| 5. |
- Axelsson, Lena, et al.
(författare)
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Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers
- 2020
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
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| 6. |
- Axelsson, Lena, et al.
(författare)
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Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
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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.
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| 7. |
- Ayoub, Maria, 1990-, et al.
(författare)
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The Family Talk Intervention in Pediatric Oncology : Potential Effects Reported by Parents
- 2024
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Ingår i: Children. - : MDPI. - 2227-9067. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
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| 8. |
- Benzein, Eva, et al.
(författare)
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Families' importance in nursing care : nurses' attitudes - an instrument development
- 2008
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Ingår i: Journal of Family Nursing. - Thousand Oaks : Sage Publications. - 1074-8407 .- 1552-549X. ; 14:1, s. 97-117
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Tidskriftsartikel (refereegranskat)abstract
- This article describes the development and testing of a research instrument, Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA), designed to measure nurses' attitudes about the importance of involving families in nursing care. The instrument was inductively developed from a literature review and tested with a sample of Swedish nurses. An item-total correlation and a first principal component analysis were used to validate the final instrument, including a second principal component analysis to analyze dimensionality, and Cronbach's alpha was used to estimate internal consistency. The instrument consists of 26 items and reveals four factors: families as a resource in nursing care, family as a conversational partner, family as a burden, and family as its own resource. Cronbach's alpha was 0.88 for the total instrument and 0.69 to 0.80 for the subscales. The instrument requires further testing with other nurse populations.
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| 9. |
- Berg, Katarina, et al.
(författare)
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Postoperative recovery from the perspective of day surgery patients : A phenomenographic study
- 2013
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Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 50:12, s. 1630-1638
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Tidskriftsartikel (refereegranskat)abstract
- Background: Today, many patients undergo surgical procedures in a day surgery setting. The shift from inpatient care to care at the patient’s own home following discharge places various demands on patients and their families during the recovery process. There is a need for knowledge of how the postoperative recovery process is perceived, as research indicates a lack of support for patients managing recovery at home.Objectives: To explore day surgery patients’ perceptions of postoperative recovery.Design: A qualitative design with a phenomenographic approach was used.Methods and settings: Semi-structured interviews with 31 patients undergoing an orthopaedic, general or urologic day surgical procedure were carried out face-to-face at the patients’ homes, 11-37 days post-discharge. Patients were recruited from two day surgery settings: one private unit and one unit associated with a local county hospital.Results: The patients perceived postoperative recovery as comprising internal and external prerequisites and implied changes in ordinary life with varying levels of support. The organization at the day surgery unit, with its advantages and disadvantages, was perceived as having an impact on the subsequent recovery trajectory. The results are demonstrated in three descriptive categories: ‘Conditions for recovery at home’, The rollback to ordinary life’ and ‘Being a cog in a flow of care’.Conclusions: Postoperative recovery following day surgery implies, from the patients’ perspective, a migration from being a recipient of care at the day surgery unit to playing an active role, with extensive responsibility at home. To manage self-care confidently, postdischarge patients require knowledge and understanding of what constitutes the normal range in recovery following their specific surgical procedure.
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| 10. |
- Carlsson, Nina, 1979-, et al.
(författare)
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Grief reactions in relation to professional and social support among family members of persons who died from sudden cardiac arrest : A longitudinal survey study
- 2022
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Ingår i: Resuscitation Plus. - : Elsevier. - 2666-5204. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symp- toms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its asso- ciation with professional and social support among bereaved family members after a close person’s death from sudden CA.Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.Results: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associ- ated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.Conclusions: Family members’ grief reactions point to the importance of proactive and available support over time to meet family members’ needs.
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