1.
Alvariza, Anette, et al.
(author)
A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
2018
In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
Journal article (peer-reviewed) abstract
Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
2.
Alvariza, Anette, et al.
(author)
Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
2019
In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
Conference paper (other academic/artistic) abstract
Background: The Carer Support Needs Assessment Tool (CSNAT) was developed to identify support needs of family carers in the context of palliative care which aims to improve quality of life, not just of patients but also their families. Aims: This study aims to 1) evaluate validity and reliability of the CSNAT in a sample of Swedish family carers and nurses in a specialised palliative care context, 2) investigate associations between carer support needs and quality of life. Methods: The study was conducted in four stages I: translation of CSNAT to Swedish; II: cognitive interviews with 8 family carers and 10 nurses; III: completion of the CSNAT, Preparedness for Caregiving Scale, Caregiver Burden Scale, Quality of Life in Life Threatening Illness- Family Carer Version by 118 family carers (spouses/partners: mean age 68 years; 69 women and 45 men). Evaluation of data quality, construct validity and test-retest reliability; IV: Investigation of associations between carer support needs and qual- ity of life using linear regression analyses. Results: CSNAT items were considered relevant and useful to identify support needs and demonstrated sound psychometric properties with satisfactory data quality and few problems with missing data. All items had satisfactory test-retest reliability. Construct validity was supported, as CSNAT items correlated with caregiver burden and preparedness. Associations were found between CSNAT items and seven different domains that represent carer quality of life; carer state, patient wellbe- ing, quality of care, outlook, environment and finances. Having more support needs was associated with poorer quality of life. Conclusion: This study adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family carers in pal- liative care. Associations between carer support needs and quality of life suggests that carers’ quality of life may be improved by acknowledging and addressing their needs for support.
3.
4.
Holm, Maja, et al.
(author)
Measurement Properties of the Anticipatory Grief Scale in a Sample of Family Caregivers in the Context of Palliative Care
2018
In: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract FC53. - 0269-2163 .- 1477-030X.
Conference paper (other academic/artistic) 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.
5.
Holm, Maja, et al.
(author)
Measurement Properties of the Texas Revised Inventory of Grief in a Sample of Bereaved Family Caregivers
2018
In: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO121. - : SAGE Publications. - 0269-2163 .- 1477-030X.
Conference paper (other academic/artistic) 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.
6.
Holm, Maja, et al.
(author)
Preparing for family caregiving in specialized palliative home care : an ongoing process
2015
In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:3, s. 767-775
Journal article (peer-reviewed) 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.
7.
Holm, Maja, et al.
(author)
Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.
2019
In: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 17:1
Journal article (peer-reviewed) 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.
8.
Holm, Maja, et al.
(author)
Short- and Long Term Effects of a Randomised Psycho-educational Intervention for Family Caregivers in Specialised Palliative Home Care
2015
In: 14th World Congress of European Association of Palliative Care. 8-10 May 2015 Copenhagen, Denmark..
Conference paper (other academic/artistic) 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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10.
Holm, Maja, et al.
(author)
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
In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract FC 25.
Conference paper (other academic/artistic) 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.
