| 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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