| 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
(författare)
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Att vara nära under livets sista tid : Personcentrerat stöd
- 2022
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Konferensbidrag (refereegranskat)abstract
- Presentationen kommer att fokusera familj och närstående och hur vården kan arbeta för att möta behov av stöd samt se till närståendes egen kraft och resurser. Hur är det att vara närstående till en person med palliativa vårdbehov? Hur vet vi vilka som behöver stöd, vilken typ av stöd och när och vad kan vi göra?
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| 3. |
- Alvariza, Anette, et al.
(författare)
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Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
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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.
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| 4. |
- 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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| 5. |
- Alvariza, Anette, et al.
(författare)
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How to support teenagers who are losing a parent to cancer : Bereaved young adults' advice to healthcare professionals-A nationwide survey
- 2017
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:3, s. 313-319
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer. Methods: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals. Results: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs. Significance of Results: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.
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| 6. |
- Alvariza, Anette
(författare)
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Hur är det att vara forskare inom palliativ vård?
- 2020
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- I denna podd träffar du vår professor Anette Alvariza som forskar inom ämnet palliativ vård. Palliativ vård är vård som inte botar, men den är ändå mycket aktiv, ofta intensiv och erbjuder lindring. Den ges till svårt sjuka patienter och deras närstående. För de patienter som får denna vård är livet dock långt ifrån över, det är i allra högsta grad närvarande och mycket kommer till sin spets. När döden är nära blir livet mer närvarande.
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| 7. |
- Alvariza, Anette, et al.
(författare)
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Ny definition av palliativ vård med fokus på lidande
- 2020
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Ingår i: Lakartidningen. - 0023-7205 .- 1652-7518. ; 117
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Tidskriftsartikel (refereegranskat)abstract
- Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries. The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.
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| 8. |
- Alvariza, Anette, et al.
(författare)
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Omvårdnad i livets slut
- 2019
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Ingår i: Edberg A-K & Wijk H (Red). Omvårdnadens grunder: Hälsa och ohälsa. - Lund : Studentlitteratur AB. ; , s. 707-745, s. 707-745
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 9. |
- Alvariza, Anette, et al.
(författare)
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Palliativ vård i hemmet
- 2019
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Ingår i: Hemsjukvård. - Stockholm : Liber. - 9789147112777 ; , s. 83-95
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 10. |
- Alvariza, Anette, et al.
(författare)
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Palliative care nurses' strategies when working in private homes : A photo-elicitation study
- 2020
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 29:1-2, s. 139-151
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes.BACKGROUND: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.DESIGN: Interpretative descriptive.METHODS: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare.CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care.RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.
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| 11. |
- Alvariza, Anette, et al.
(författare)
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The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness : A feasibility study from parents' perspectives
- 2021
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 19:2, s. 154-160
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Tidskriftsartikel (refereegranskat)abstract
- Objective One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.Method A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.Results FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.Significance of results According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.
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| 12. |
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| 13. |
- Alvariza, Anette, et al.
(författare)
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Viktigt att stärka närståendes möjligheter att förbereda sig
- 2016
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Ingår i: Läkartidningen. - : Swedish Medical Association. - 0023-7205 .- 1652-7518. ; 113:47, s. 1-3
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- När svårt sjuka patienter vårdas i det egna hemmet har närstående ofta en avgörande roll.De närstående har också, utöver vårdsituationen, att hantera sina egna känslor kring förlust, sorg och död.Närstående är ofta otillräckligt förberedda för sin vårdarroll och har behov av information och stöd.Att vara förberedd har lyfts fram som ett viktigt fenomen för närstående. Det har visat sig relatera till flera positiva faktorer och anses ha en skyddande effekt mot negativa konsekvenser.Med en öppen, ärlig kommunikation och ett riktat stöd ökar närståendes möjligheter att förbereda sig för en vårdande roll samt det faktum att sjukdomen är obotlig och leder till döden.
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| 14. |
- Angelhoff, Charlotte, medicine doktor, 1974-, et al.
(författare)
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Communication, self-esteem and prolonged grief in parent-adolescent dyads, 1-4 years following the death of a parent to cancer
- 2021
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 50
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Talking and grieving together may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and their parents to cope better with the situation. The aim of this study was to explore communication, self-esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer.METHOD: This study has a descriptive and comparative design. Twenty family dyads consisting of parentally bereaved adolescents (12-19 years) and their widowed parents completed the Parent and Adolescent Communication Scale, Rosenberg Self-Esteem Scale and Prolonged Grief-13, 1-4 years following the death of a parent.RESULTS: Twelve family dyads reported normal-high parent-adolescent communication, 11 dyads rated normal-high self-esteem. Two adolescents and three parents scored above the cut-off for possible prolonged grief disorder (≥35), none of these were in the same dyads. There was a difference (p < .05) between boys (mean 40.0) and girls (mean 41.9) with regard to open family communication, as assessed by parents. Girls reported lower self-esteem (mean 26.0) than boys (mean 34.1, p < .01).CONCLUSIONS: This study provides insights from parentally bereaved families which indicate that despite experiencing the often-traumatic life event of losing a parent or partner, most participants reported normal parent-adolescent communication, normal self-esteem and few symptoms of prolonged grief. The potential usefulness of identifying families who may need professional support in family communication following the death of a parent is discussed.
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| 15. |
- Anna, O'Sullivan, et al.
(författare)
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Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness
- 2019
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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.
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| 16. |
- 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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| 17. |
- 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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| 18. |
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| 19. |
- 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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| 20. |
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| 21. |
- 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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| 22. |
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| 23. |
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| 24. |
- Bauman, Cecilia, et al.
(författare)
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Mutuality and understanding through web-based support during specialised palliative home care : Family caregivers’ and patients’ experiences
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.
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| 25. |
- Bauman, Cecilia, et al.
(författare)
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Recognition and reassurance through web-based support for family caregivers during specialised palliative home care
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.
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| 26. |
- Carlsson, Nina, et al.
(författare)
-
Det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personersom avlidit till följd av hjärtstopp
- 2022
-
Konferensbidrag (refereegranskat)abstract
- Bakgrund: Ett palliativt förhållningssätt omfattar uppföljning av närstående vilket ofta saknas vid plötsliga dödsfall. Närstående riskerar då att lämnas utan professionellt stöd med obesvarade frågor, vilket kan bidra till förlängd sorg.Syfte: Att utforska det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personer som avlidit till följd av plötsligt hjärtstopp.Metod: Denna korrelerande observationsstudie baserades på en enkät till närstående sex och tolv månader efter dödsfallet. Enkäten bestod av bakgrundsfrågor om de närstående, förlusten, och professionellt stöd, samt validerade skattningsskalor för att mäta förlängd sorg (PG-13) och socialt stöd (MSPSS). Data analyserades med regressionsanalyser.Resultat: Deltagarna (n=69) var i genomsnitt 61 år (37–71) och flertalet var kvinnor (67%). Vanligaste relationen till den avlidne var vuxna barn (52%) och efterlevande partner (36%). Vid sex månader skattade de närstående som hade ett professionellt stöd högre symtomnivåer av förlängd sorg än de utan professionellt stöd (B=10,28,p=0,001). Ett signifikant samband fanns även mellan högre socialt stöd och lägre självskattade symtom på förlängd sorg, oavsett om stödet kom från familj (B=-3,24, p=0,001), vänner (B=-2.43, p=0,020) eller andra betydelsefulla personer (B=-2,29, p=0,010). Vid tolv månader kvarstod endast sambandet till professionellt stöd (B=9,05, p=0,020). En majoritet skattade färre eller oförändrade symtom på förlängd sorg vid tolv månader jämfört med sex månader, men en betydande andel skattade högre symptomnivåer (33%).Betydelse: Sambandet mellan professionellt stöd och höga symtomnivåer av förlängd sorg visar på betydelsen av efterlevandestöd. Genom att stödja närstående i kommunikationen med familj och vänner kan det sociala stödet stärkas. För att understödja den närståendes sorgeprocess bör stöd erbjudas i både akut och palliativ kontext.
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| 27. |
- Carlsson, Nina, 1979-, et al.
(författare)
-
Factors Associated With Symptoms of Prolonged Grief and Psychological Distress Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest
- 2023
-
Ingår i: Journal of Cardiovascular Nursing. - : Wolters Kluwer. - 0889-4655 .- 1550-5049. ; 38:5, s. 454-461
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with an increased risk of prolonged grief disorder and psychological distress.Objectives: The aims of this study were (1) to explore the associations between symptoms of prolonged grief and psychological distress and (2) to identify factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest.Methods: This cross-sectional survey included bereaved adult family members. Demographic data and measures of prolonged grief (Prolonged Grief Disorder-13), anxiety and depression (Hospital Anxiety and Depression Scale), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and perceived social support (Multidimensional Scale of Perceived Social Support) were analyzed using Spearman’s correlations (rs) as well as univariate and multiple linear regression analyses.Results: In total, 108 family members participated. Significant associations between symptoms of prolonged grief, anxiety, depression, and posttraumatic stress were identified (rs = 0.69–0.79, P < .001). Offered, sought, and/or received professional support from healthcare, lower levels of perceived social support, being a spouse of the deceased, female sex, younger age, and family presence during resuscitation were significantly associated with higher symptom levels of prolonged grief, anxiety, depression, and/or posttraumatic stress.Conclusions: The results indicate that family members with higher levels of symptoms were offered, sought, and/or received professional support. However, because a minority are offered professional support after deaths from cardiac arrest, future interventions need to proactively identify family members in need of support. Furthermore, perceived social support seems to be an important factor for family members of persons who died from cardiac arrest.
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| 28. |
- Carlsson, Nina, et al.
(författare)
-
Factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest
- 2023
-
Ingår i: Journal of Cardiovascular Nursing. - 0889-4655 .- 1550-5049. ; 38:5, s. 454-461
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with an increased risk of prolonged grief disorder and psychological distress.OBJECTIVES: The aims of this study were (1) to explore the associations between symptoms of prolonged grief and psychological distress and (2) to identify factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest.METHODS: This cross-sectional survey included bereaved adult family members. Demographic data and measures of prolonged grief (Prolonged Grief Disorder-13), anxiety and depression (Hospital Anxiety and Depression Scale), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and perceived social support (Multidimensional Scale of Perceived Social Support) were analyzed using Spearman's correlations (rs) as well as univariate and multiple linear regression analyses.RESULTS: In total, 108 family members participated. Significant associations between symptoms of prolonged grief, anxiety, depression, and posttraumatic stress were identified (rs = 0.69-0.79, P < .001). Offered, sought, and/or received professional support from healthcare, lower levels of perceived social support, being a spouse of the deceased, female sex, younger age, and family presence during resuscitation were significantly associated with higher symptom levels of prolonged grief, anxiety, depression, and/or posttraumatic stress.CONCLUSIONS: The results indicate that family members with higher levels of symptoms were offered, sought, and/or received professional support. However, because a minority are offered professional support after deaths from cardiac arrest, future interventions need to proactively identify family members in need of support. Furthermore, perceived social support seems to be an important factor for family members of persons who died from cardiac arrest.
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| 29. |
- Carlsson, Nina, 1979-, et al.
(författare)
-
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
-
Ingår i: Resuscitation Plus. - : Elsevier. - 2666-5204. ; 12
-
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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| 30. |
- Carlsson, Nina, et al.
(författare)
-
Losing a close person following death by sudden cardiac arrest : bereaved family members’ lived experiences
- 2022
-
Ingår i: Death Studies. - : Taylor & Francis. - 0748-1187 .- 1091-7683. ; 46:5, s. 1139-1148
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Tidskriftsartikel (refereegranskat)abstract
- The death of a close person has profound impact on people’s lives, and when death is sud- den there are no possibilities to prepare for the loss. The study aimed to illuminate mean- ings of losing a close person following sudden cardiac arrest. A qualitative interpretive design was used, and twelve bereaved family members were interviewed. The results show a transition from pending between life and sudden loss during resuscitation and proceeding with life after the sudden loss. These results of being in liminality illuminate the family members’ essential narration and the importance of compassionate care throughout this challenging transition.
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| 31. |
- Carlsson, Nina, 1979-
(författare)
-
Sorgereaktioner hos närstående till personer som avlidit till följd av plötsligt hjärtstopp
- 2022
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Syfte: Avhandlingens övergripande syfte var att utforska sorgereaktioner hos närstående till personer som avlidit till följd av plötsligt hjärtstopp. De specifika syftena var att: belysa innebörder av levda erfarenheter av att förlora en nära person som avlidit till följd av plötsligt hjärtstopp (I), beskriva symtom på förlängd sorg och självskattad hälsa hos närstående, samt att jämföra partners och icke-partners (II), undersöka samband mellan symtom på förlängd sorg och psykisk ohälsa samt identifiera associerade faktorer (III), undersöka sorgereaktioner i relation till socialt och professionellt stöd, sex och tolv månader efter förlusten (IV).Metod: Datainsamlingen genomfördes genom kvalitativa intervjuer (n=12) (I) samt via enkäter sex (n=108) (I-III) och tolv (n=69) (IV) månader efter dödfallet. Enkäterna innehöll bakgrundsfrågor samt mätinstrumenten: Prolonged Grief Disorder (PG-13), RAND-36, Health Index (HI), Minimal Insomnia Symptom Scale (MISS), Hospital Anxiety and Depression Scale (HADS), Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5), Multidimensional Scale of Perceived Social Support (MSPSS). Intervjudata analyserades utifrån fenomenologisk hermeneutik (I) och enkätdata analyserades med beskrivande och inferentiell statistik (II-IV).Resultat: Under hjärtstoppshändelsen befann sig närstående i ett gränsland mellan liv och död. Efter dödsfallet var närståendes berättande betydelsefullt i sökandet efter förståelse och mening. Att sakna svar kunde hålla kvar närstående i liminalitet och försvåra sorgeprocessen (I). Var femte närstående (18%) rapporterade symtom på förlängd sorg sex månader efter förlusten. Även symtom på ångest (30%) och depression (19%) var vanligt medan få rapporterade symtom på posttraumatisk stress (6%) (II). Dessa symtom samexisterade i hög grad (rs=0,69-0,79) (III) och kunde även kvarstå eller förvärras över tid (IV). Både socialt och professionellt stöd var signifikant associerat med symtom på förlängd sorg och psykisk ohälsa (III-IV). En majoritet (86%) rapporterade att de inte erbjudits stöd från hälso- och sjukvården vid dödsfallet (II).Slutsats: För att underlätta sorgeprocessen bör närstående erbjudas professionellt stöd under hjärtstoppshändelsen och uppföljande samtal efter dödfallet. Genom ett proaktivt professionellt stöd och användning av validerade mätinstrument kan närstående i behov av ytterligare psykologiskt stöd identifieras.
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| 32. |
- Carlsson, Nina, et al.
(författare)
-
Symptoms of prolonged grief and self-reported health among bereaved family members of persons who died in sudden cardiac arrest
- 2023
-
Ingår i: Omega. - : Sage Publications. - 0030-2228 .- 1541-3764. ; 87:1, s. 66-86
-
Tidskriftsartikel (refereegranskat)abstract
- Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members’ health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.
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| 33. |
- Eklund, Rakel
(författare)
-
Barns erfarenheter av ”the Family Talk Intervention” : Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
- 2020
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.
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| 34. |
- Eklund, Rakel, 1986-, et al.
(författare)
-
Being the Child of a Parent with a Life-threatening Illness: : Minor Children’s Self-reports on Illness-related Information and Family Communication
- 2019
-
Konferensbidrag (refereegranskat)abstract
- Background: Open and honest communication between parents and children when a parent has a life-threatening illness seems to be important in helping the children in everyday life. Previous research on bereaved children shows that inadequate information and poor communication between family and professionals during the illness trajectory increase the risk for long-term psychological distress years after the loss.Aim: To explore minor children’s self-report of illness-related information and family communication when living with a parent with a life-threatening illness who received specialized palliative home care.Methods: This study used baseline questionnaire data from an intervention that aimed to open up for communication about the parent’s illness and support the family in their situation. A total of 48 minor children (aged 7-19 years) from 30 families were recruited from four specialized palliative home care units in Stockholm, Sweden. The questionnaire data were analysed with descriptive statistics.Results: All but one of the 48 children reported that someone had told them about the parent’s illness; however, two-thirds (32/48) wanted more illness-related information. When asked whether they could talk about how they felt or show their feelings to someone in the family, nearly half of the 20 children aged 8-12 years reported themselves partially or completely unable to do so. Half of the children in the same age group wanted to be able to talk and/or show more about how they felt. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask.Conclusion: Minor children of parents with a life-threatening illness want and request more communication about illness-related issues and their own feelings. To support these children, interventions should be developed that foster family communication and improve communication between family/children and healthcare professionals.
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| 35. |
- Eklund, Rakel, et al.
(författare)
-
Children’s experiences of the family talk intervention when a parent is cared for in palliative home care : A feasibility study
- 2022
-
Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 46:7, s. 1655-1666
-
Tidskriftsartikel (refereegranskat)abstract
- The aim with this study was to explore minor children’s experiences of the Family Talk Intervention (FTI) when a parent is cared for in palliative home care, with a focus on feasibility. The main goal of FTI is to increase family communication about the illness. This paper is based on 25 children’s reports, derived from a pilot study with a mixed method design, involving both questionnaires and interviews, performed after the children’s participation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard and acknowledged by the interventionists and recommended FTI to other children in similar situations.
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| 36. |
- Eklund, Rakel, et al.
(författare)
-
Children’s Self-Reports About Illness-Related Information and Family Communication When a Parent Has a Life-Threatening Illness
- 2020
-
Ingår i: Journal of Family Nursing. - : SAGE Publications. - 1074-8407 .- 1552-549X. ; 26:2, s. 102-110
-
Tidskriftsartikel (refereegranskat)abstract
- Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.
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| 37. |
- Eklund, Rakel, 1986-, et al.
(författare)
-
Children's Views Are Not Taken Into Account in Accordance With Article 12 of the United Nations Convention on the Rights of the Child in the Family Talk Intervention When a Parent Is Cared for in Palliative Care.
- 2020
-
Ingår i: Omega. - : SAGE Publications. - 0030-2228 .- 1541-3764.
-
Tidskriftsartikel (refereegranskat)abstract
- Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child's right to express their opinion and have it respected in processes that affect them. The aims of this paper were to explore the child's active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Fieldnotes were taken during the programme and later analysed with interpretive descriptions. The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.
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| 38. |
- Eklund, Rakel, 1986-, et al.
(författare)
-
Talking about death when a parent with dependent children dies of cancer : A pilot study of the Family Talk Intervention in palliative care
- 2022
-
Ingår i: Death Studies. - : Informa UK Limited. - 0748-1187 .- 1091-7683. ; 46:10, s. 2384-2394
-
Tidskriftsartikel (refereegranskat)abstract
- This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.
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| 39. |
- Eklund, Rakel, 1986-, et al.
(författare)
-
The Family Talk Intervention for families when a parent is cared for in palliative care“ : potential effects from minor childrens perspectives
- 2020
-
Ingår i: BMC Palliative Care. - : Springer Nature. - 1472-684X. ; 19:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundChildren show long-term psychological distress if family communication and illness-related information are poor during and after a parent’s illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.Methods This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.ResultsThe children reported that FTI increased their knowledge about their parents’ illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.ConclusionsChildren who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
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| 40. |
- Eklund, Rakel, et al.
(författare)
-
The family talk intervention in palliative care : a study protocol
- 2018
-
Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 17:35
-
Tidskriftsartikel (refereegranskat)abstract
- Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.
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| 41. |
- Eriksson, Heléne, 1964-
(författare)
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End of Life Stroke Care : perspectives of health-care professionals and family members
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionEven though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.AimThe overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.Design and MethodsThis thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.ResultsFactors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.Conclusions:The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.
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| 42. |
- Ewertzon, Mats, et al.
(författare)
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Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care
- 2018
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Ingår i: Journal of Advanced Nursing. - : Wiley-Blackwell. - 0309-2402 .- 1365-2648. ; 74:8, s. 1839-1850
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Tidskriftsartikel (refereegranskat)abstract
- AimTo adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. BackgroundInvolvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. DesignA psychometric evaluation study, with a cross-sectional design. MethodThe content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. ResultsThe content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. ConclusionThe study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care.
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| 43. |
- Gedda, Jenny, et al.
(författare)
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We Are Co : Ett digitalt verktyg som stimulerar och inspirerar medmänniskor till en förbättradgemensam upplevelse i palliativ vård
- 2022
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Konferensbidrag (refereegranskat)abstract
- Trots insikten om den sociala delens betydelse för en holistisk vård saknas idag personcentrerade lösningar på hur vi kan möta upp och stödja den döendes och de närståendes sociala situation i palliativ vård.Syftet med projektet är att utforma en app för den som är nära livets slut och hens närstående. Målet är ett digitalt verktyg som ska bidra till att inspirera och engagera människor att belysa livet, den unika individen och skapa upplevelser av gemenskap, vardag, hopp och delaktighet nära livets slut. Genom att utgå från det sociala mötet och fokusera på att bidra med konkret inspiration för att stimulera till aktiviteter, samtal och möten.En innovationsprocess används där patienter med behov för palliativ vård, närstående, experter från vården och forskare deltar för att skapa förutsättningar för en användarcentrerad och holistisk digital tjänst. Insikter och koncept utformas i workshops med närståendegrupp (12 personer som förlorat närstående) samt intervjuer med slutanvändare och workshops med expertgruppen (10 experter med erfarenhet av palliativvård). Genom att involvera användare löpande i utvecklingen samskapas en lättanvänd, skalbar, jämlik och användarvänlig tjänst med hög grad av personifiering.Resultat från workshops och intervjuer är positiva och bekräftar ett behov av ett verktyg med fokus på det sociala mellanmänskliga mötet. Användartester av första prototypen bidrog till en mer innovativ användning av bild och video och utökad fokus på imaginär inspiration som grundas på sinnen och livsämnen.Projektet har potential att addera förutsättningar att underlätta och inspirera personer nära livets slut och närståendes möten under vårdperioden med fokus på sociala upplevelser. En förbättrad social upplevelse kan minska stress för personen och närstående, möjliggöra för personalen att fokusera på de andra viktiga områdena av vården samt skapa bättre förutsättningar för kommunikation mellan personer nära livets slut, närstående och personalen.
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| 44. |
- Hagell, Peter, 1966-, et al.
(författare)
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Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 45. |
- Hagell, Peter, et al.
(författare)
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Assessment of Burden Among Family Caregivers of People With Parkinson's Disease Using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 46. |
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| 47. |
- Henriksson (Alvariza), Anette
(författare)
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A support group programme for family members : an intervention during ongoing palliative care
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.
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| 48. |
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| 49. |
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