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- Lövgren, Malin, et al.
(författare)
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What is most distressing at present? : A mixed method study about patients with inoperable lung cancer
- 2008
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Konferensbidrag (refereegranskat)abstract
- People with lung cancer (LC) experience many distressing concerns. Standardizedassessment questionnaires tend to use predetermined items reflectingprofessionals’ perspectives of important issues, but even other areas may causedistress for patients. We therefore studied spontaneous reports of what isMOST distressing for 343 patients with inoperable LC during the 1st year postdiagnosis, and explored potential gender differences, while controlling for age.Patients with inoperable LC were recruited close to time of diagnosis throughtwo university hospitals. They were asked to respond to an open inductivequestion “What do you find most distressing at present?” at 6 timepoints: closeto diagnosis and prior to treatment (T1), two weeks after T1, and one, three, sixand 12 months after T1. The manifest content of all responses was analyzed.Descriptive statistics and logistic regressions were used to meet the study aims.Results are presented in 3 overarching dimensions: distress related to the body,distress related to life situation and iatrogenic distress. Distress related to thebody was reported by 90% of patients at one or more time points during the1st year post-diagnosis, and was more common over time. Distress related tolife situation was reported by 80% of the patients at one or more time points,becoming less common over time. Iatrogenic distress, i.e. distress caused bycontact with the health care system (HCS) was reported by 27% of this sampleas most distressing at some time point during this 1st year. Logistic regressionsshowed that men > 64 years reported most distress related to breathingmore often than did women in the same age group during the 1st year postdiagnosis. Women >64 years reported most distress related to “outlook” moreoften than did men in the same age group during this year. Women < 65years also more commonly reported most distress related to emotionalproblems at any time point in the 1st year, and reported most distress relatedto the HCS close to diagnosis more often than men in the same age group did.We found this patient group reported many and varied concerns as MOSTdistressing, with many concerns beyond the scope of common assessmentinstruments. A disturbing finding was how common reports of most distresswere related to the HCS in this very symptomatic group of people. Both genderand age seem to be factors influencing distress related to breathing, outlook,emotional problems and contact with the HCS.
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- 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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- 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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- 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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- 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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- 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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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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| 10. |
- Bergersen, Emily Beatrice, et al.
(författare)
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Adolescents' and young people's needs and preferences for support when living with a parent with life-threatening cancer : a grounded theory study
- 2022
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Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer. Methods Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz. Results Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'. Conclusion Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.
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