| 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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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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| 3. |
- 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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| 4. |
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| 5. |
- 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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| 6. |
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| 7. |
- Haman, Ewa, et al.
(författare)
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Noun and verb knowledge in monolingual preschool children across 17 languages : Data from Cross-linguistic Lexical Tasks (LITMUS-CLT)
- 2017
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Ingår i: Clinical Linguistics & Phonetics. - PHILADELPHIA : Taylor & Francis Group. - 0269-9206 .- 1464-5076. ; 31:11-12, s. 818-843
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Tidskriftsartikel (refereegranskat)abstract
- This article investigates the cross-linguistic comparability of the newly developed lexical assessment tool Cross-linguistic Lexical Tasks (LITMUS-CLT). LITMUS-CLT is a part the Language Impairment Testing in Multilingual Settings (LITMUS) battery (Armon-Lotem, de Jong & Meir, 2015). Here we analyse results on receptive and expressive word knowledge tasks for nouns and verbs across 17 languages from eight different language families: Baltic (Lithuanian), Bantu (isiXhosa), Finnic (Finnish), Germanic (Afrikaans, British English, South African English, German, Luxembourgish, Norwegian, Swedish), Romance (Catalan, Italian), Semitic (Hebrew), Slavic (Polish, Serbian, Slovak) and Turkic (Turkish). The participants were 639 monolingual children aged 3;0-6;11 living in 15 different countries. Differences in vocabulary size were small between 16 of the languages; but isiXhosa-speaking children knew significantly fewer words than speakers of the other languages. There was a robust effect of word class: accuracy was higher for nouns than verbs. Furthermore, comprehension was more advanced than production. Results are discussed in the context of cross-linguistic comparisons of lexical development in monolingual and bilingual populations.
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| 8. |
- Henoch, Ingela, 1956, et al.
(författare)
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Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
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Forskningsöversikt (refereegranskat)abstract
- Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
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| 9. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Use of the Preparedness for Caregiving Scale in Palliative Care : A Rasch Evaluation Study
- 2015
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 50:4, s. 533-541
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Tidskriftsartikel (refereegranskat)abstract
- Context. Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care. Objectives. The aim of this study was to evaluate the measurement properties of the original English version and a Swedish version of the Preparedness for Caregiving Scale (PCS). Methods. The sample (n = 674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected, and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model. Results. Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex was detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index. Conclusion. The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions. (C) 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 10. |
- Holm, Maja, et al.
(författare)
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Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care
- 2019
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 22:12, s. 1530-1535
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.
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| 11. |
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| 12. |
- Holm, Maja, et al.
(författare)
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Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care A Prospective Correlational Study
- 2017
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 40:1, s. 76-83
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Tidskriftsartikel (refereegranskat)abstract
- Background: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. Objective: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. Intervention/Methods: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score <= 0 vs >= 1). Results: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Conclusions: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Implications for Practice: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.
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| 13. |
- Holm, Maja, et al.
(författare)
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Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
- 2015
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
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| 14. |
- Holm, Maja, et al.
(författare)
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Leading an intervention for family caregivers : a part of nursing in palliative care
- 2017
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Ingår i: International Journal of Palliative Nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 23:4, s. 166-172
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Tidskriftsartikel (refereegranskat)abstract
- Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.
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| 15. |
- Holm, Maja, et al.
(författare)
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Measurement Properties of the Anticipatory Grief Scale in a Sample of Family Caregivers in the Context of Palliative Care
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract FC53. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Anticipatory Grief Scale (AGS) consists of 27 items and was developed to measure grief before the death of a loved one. Although it was originally developed to be used in the context of demen- tia, the instrument is relevant in palliative care where family caregivers often face a complex and difficult situation before the patient’s death. Because family caregivers with high levels of anticipatory grief might have need for more support both during ongoing palliative care and in bereavement, it is important to use valid instruments to measure grief reactions in anticipation of the patient’s death. Aim: The aim was to evaluate the measurement properties of the AGS in a sample of family caregivers in palliative care. Methods: In this psychometric study, data were collected in the context of ongoing palliative care and 270 family caregivers were included in the study. The family caregivers completed a questionnaire, including the AGS and demographic questions. The factor structure (construct validity) of the scale was evaluated using exploratory factor analysis for ordinal responses. Ordinal alpha (α) was used to estimate internal consistency. Results: The results of the exploratory factor analysis suggested that there were measurement problems and inconsistencies concerning the original AGS. Further analysis supported that the number of items should be reduced from 27 to 13 items. Analysis of the remaining items sug- gested a two-factor solution. The two dimensions captured the Behavioral reactions and Emotional reactions of grief in family caregivers in pallia- tive care. Internal consistency was satisfactory for both scales, α=0.83 and α=0.84 respectively. Conclusions: This study resulted in a revised 13 item version of the AGS, including two dimensions. The instrument appears to be promising for use in palliative care and in research but the measurement properties of the revised AGS needs to be confirmed in further studies. Funding This study was supported by the Swedish Cancer Society.
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| 16. |
- Holm, Maja, et al.
(författare)
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Measurement Properties of the Texas Revised Inventory of Grief in a Sample of Bereaved Family Caregivers
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO121. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Texas Revised Inventory of Grief (TRIG) is a well- used instrument designed to measure the intensity of post-loss grief. It consists of two subscales; Past Behaviours involves thinking back to the time just after a loved one’s death and Present Feelings focuses on the current situation. The two subscales consist of 8 and 13 items respec- tively and lower scores indicate more intense grief. Because family car- egivers in palliative care may be in need of support during bereavement, the TRIG could be an important instrument to measure their grief reac- tions. Hence it needs to be validated for further use in palliative care. Aim: The aim was to evaluate measurement properties of the TRIG in a sample of bereaved Swedish family caregivers. Methods: In this psychometric study, the TRIG was translated to Swedish according to standard principles. Data were collected from 129 bereaved family caregivers whose loved ones had been enrolled in palliative care units. The family caregivers completed the TRIG and demographic ques- tions six months after the death of the patient. Separate exploratory factor analyses for ordinal responses were used to evaluate the factor structure (i.e. construct validity) for each subscale. Ordinal alpha (α) was used to estimate internal consistency. Results: The exploratory factor analyses showed that both the Past Behaviours and Present Feelings measure one underlying construct, sup- porting construct validity. Internal consistency was satisfactory for both scales, α=0.92 and α=0.95 respectively. Conclusions: The results show that the two subscales of the TRIG Past Behaviours and Present Feelings are unidimensional, i.e., measuring one underlying construct. Hence, the two subscales could be used in palliative care after the patient’s death in order to capture both the past and current levels of grief in family caregivers. However, it is also necessary to con- tinue validating the TRIG in a larger sample. Funding This study was supported by the Swedish cancer society.
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| 17. |
- Holm, Maja, et al.
(författare)
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Preparing for family caregiving in specialized palliative home care : an ongoing process
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:3, s. 767-775
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care.Method: An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique.Results: Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss).Significance of results: Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.
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| 18. |
- Holm, Maja
(författare)
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Promoting preparedness for family caregiving : a randomised controlled intervention in palliative care
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patients with incurable illness are increasingly being cared for in their homes with the help of palliative home care. However, in this system family caregivers also play an important role and often take a great responsibility for the patient’s care. Family caregivers often lack preparedness for the situation, which could have negative consequences on their health and wellbeing. Methods: The overall aim of this thesis was to develop and test a psycho-educational intervention for family caregivers in specialised palliative home care and to study processes and effects of the intervention. The psycho-educational intervention was developed based on the theoretical framework of Andershed and Ternestedt with focus on family caregivers’ need for education and practical and emotional support. The intervention was delivered by health professionals and tested as a randomised controlled trial (RCT) at 10 specialised palliative home care settings, including an intervention arm and a control arm with standard support. The thesis includes four studies of which two (I, II) had a qualitative design and focused on processes involved in or considered relevant for the intervention. Two studies (III, IV) had a quantitative approach and focused on the effects of the intervention. The overall aim of the intervention was to improve family caregivers’ feelings of preparedness for caregiving. In total, 194 family caregivers participated in the RCT with 96 family caregivers in the control arm and 98 in the intervention arm. Aim and results of studies: The aim of Study I was to study how family caregivers’ experienced their preparedness for caregiving in palliative care. The results showed that preparing for caregiving was viewed as an ongoing process by family caregivers and that it was related to the process of preparing for the patient’s death. The aim of Study II was to explore the experiences of delivering and participating in the intervention from the perspectives of health professionals and family caregivers. The intervention was generally perceived as a positive experience and both groups highlighted that it could be used a tool to support family caregivers to become better prepared. The aim of Study III was to investigate the effects of the intervention compared to standard support in short- term and long-term. The results showed that the intervention had significantly improved family caregivers’ feelings of preparedness for caregiving both in short-term and long-term. The aim of Study IV was to investigate the characteristics of family caregivers who did not benefit from the intervention. The results indicated that family caregivers who did not benefit were significantly less vulnerable at baseline than those who did. Hence, they might not have had the same need for the intervention to become better prepared. Conclusion: In conclusion of the four studies, the psycho-educational intervention could be valuable as a part of the health professional work to support family caregivers and increase their chances to become better prepared for caregiving. For the development of future interventions, it is important that family caregivers who are perceived as vulnerable are not excluded from participating, because they could be in most need of them.
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| 19. |
- Holm, Maja, et al.
(författare)
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Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.
- 2019
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated.The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care.The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis.The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13.This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.
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| 20. |
- Holm, Maja, et al.
(författare)
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Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers
- 2018
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Ingår i: Research in Nursing & Health. - : Wiley. - 0160-6891 .- 1098-240X. ; 41:5, s. 480-488
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Tidskriftsartikel (refereegranskat)abstract
- The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (>0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.
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| 21. |
- Holm, Maja, et al.
(författare)
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Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data
- 2018
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Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.
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| 22. |
- Holm, Maja, et al.
(författare)
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Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
- 2017
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT. (C) 2017 Elsevier Ltd. All rights reserved.
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| 23. |
- Holm, Maja, et al.
(författare)
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Short- and Long Term Effects of a Randomised Psycho-educational Intervention for Family Caregivers in Specialised Palliative Home Care
- 2015
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Ingår i: 14th World Congress of European Association of Palliative Care. 8-10 May 2015 Copenhagen, Denmark..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Family caregivers in palliative home care often face a heavy responsibility and a burden of caring for a person with incurable illness. Research has showed that there is a need for intervention studies to make family caregivers more prepared and competent for their situation. Aim: To investigate the short- and long-term effects of a randomised psycho-educational intervention for family caregivers in specialised palliative home care. Methods: A psycho-educational intervention with supportive and educative components was designed based on the theoretical framework of Andershed and Ternestedt. Family caregivers from 10 specialised palliative home care units were included. The intervention was delivered as a randomised control trial where family caregivers who agreed to take part in the study were randomised to an intervention group with three sessions or to a control group with standard support. Family caregivers were required to answer to questionnaires at baseline, upon completion and two months following the intervention. The questionnaires comprised instruments concerning family caregivers’ feelings of preparedness, competence, reward, burden, health, anxiety and depression. A regression model based on robust variance estimates was conducted for all tested outcomes. Results: 177 family caregivers completed all three measurements. Results showed that in the short-term follow-up, family caregivers in the intervention group had significantly better self-rated competence for caregiving and experience of health. In the long-term follow-up, the intervention group had significantly better self-rated preparedness for caregiving compared to the control group. Conclusion: The results add to previous research that relatively short psycho-educational interventions could have important positive short- and long-term effects on family caregivers in palliative care.
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| 24. |
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| 25. |
- Holm, Maja, et al.
(författare)
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Variations in Grief, Anxiety, Depression and Health among Family Caregivers before and after the Death of a Close Person in Palliative Home Care (oral presentation)
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract FC 25.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Feelings of grief, symptoms of anxiety and depression, and poor health are often observed in family caregivers both before and after an expected death. However, the variations over time needs to be explored further and it needs to be examined if support during caregiv- ing could influence these emotional reactions. Aims: The aim was to investigate longitudinal variations in grief, symp- toms of anxiety and depression and self-rated health among family car- egivers in palliative home care who participated in a randomised psycho-educational intervention study. Methods: Data derived from a randomised intervention study with two arms (intervention and control). Data were collected through self- reported questionnaires at four time points: baseline, after the interven- tion, two months later and six months after the patient’s death. Analyses were performed using a mixed model ANOVA for pre-death grief (3 measurements) and anxiety, depression and health (4 measurements). Post-death grief was measured at one occasion, after the patient’s death. Unpaired T-tests were used to examine differences between interventions and controls after death. Results: In total, 117 family caregivers completed all measurements. Grief was stable across the three pre-death measurements with no sig- nificant variations, while anxiety, depression and health varied signifi- cantly across the four time points. After the patients’ death, the level of anxiety and depression decreased, and health increased. No significant differences were found between interventions and controls for any of the variables neither pre- or post-death. Conclusion: This study showed different patterns in grief compared to anxiety and depression and health. This adds to a body of research showing that grief is distinct from symptoms of anxiety and depression. Further, it also demonstrates the complex emotional reactions of being a family caregiver in palliative care.
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