| 1. |
- Adolfsson, Karin, et al.
(författare)
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Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians
- 2022
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 31:6
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Tidskriftsartikel (refereegranskat)abstract
- Objective This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC). Methods A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated. Results The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility. Conclusions Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.
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| 2. |
- Akkawi El Edelbi, Ranaa, et al.
(författare)
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Parents' experiences of handling oral anticancer drugs at home : 'It all falls on me …'
- 2023
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Ingår i: Journal of Evaluation In Clinical Practice. - : Wiley-Blackwell. - 1356-1294 .- 1365-2753. ; 29:1, s. 94-100
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.METHODS: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.RESULTS: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.CONCLUSION: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home.
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| 3. |
- 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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| 4. |
- 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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| 5. |
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| 6. |
- 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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| 7. |
- Ayoub, Maria, 1990-, et al.
(författare)
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The Family Talk Intervention in Pediatric Oncology : Potential Effects Reported by Parents
- 2024
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Ingår i: Children. - : MDPI. - 2227-9067. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents' perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI's ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
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| 8. |
- Bartholdson, Cecilia, et al.
(författare)
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Communication about diagnosis and prognosis : A population-based survey among bereaved parents in pediatric oncology
- 2022
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Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 31:12, s. 2149-2158
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.
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| 9. |
- Beernaert, Kim, et al.
(författare)
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Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study
- 2017
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
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| 10. |
- Beernaert, Kim, et al.
(författare)
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Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy : A Population Survey
- 2019
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Ingår i: Journal of Child Neurology. - : SAGE Publications. - 0883-0738 .- 1708-8283. ; 34:4, s. 210-215
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness.STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care.RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled.CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.
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