| 1. |
- 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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| 2. |
- 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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| 3. |
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| 4. |
- Eilertsen, Mary-Elizabeth Bradley, et al.
(författare)
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Cancer-bereaved siblings' positive and negative memories and experiences of illness and death : A nationwide follow-up.
- 2018
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Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:4, s. 406-413
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.
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| 5. |
- Eilertsen, M.E, et al.
(författare)
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The Voices of Cancer-Bereaved Siblings : A Nation-Wide Long-Term Follow-up
- 2018
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Ingår i: Pediatric blood & cancer. - : Wiley. - 1545-5009. ; , s. 555-556
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Konferensbidrag (refereegranskat)abstract
- Background/Objectives: Siblings face many challenges and the aim of this paper is to explore bereaved siblings’ memories and experiences of their brother's or sister's illness and death.Design/Methods: In this nationwide Swedish study 174 of 240 (73 %) bereaved siblings participated and 70 % responded to two open‐ended questions on siblings’ positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.Results: The bereaved siblings’ responses were categorized into four different themes: endurance vs. vulnerability; family cohesion vs. family conflicts; growth vs. stagnation; professional support vs. lack of professional support. Endurance was expressed as the influence that the ill siblings’ willpower, good mood and stamina had on the healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness. Family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme, most siblings perceived support by physicians and staff at the hospital as being warm, kind and honest, while some siblings had negative experiences.Conclusions: Our study shows that bereaved siblings can have positive memories and experiences, even though the death of a sibling is a distressing situation. The significance of the positive buffering effect on the bereaved siblings’ own endurance, personal growth, family cohesion and social support should be noted. The knowledge acquired by listening to the voices of bereaved siblings can be valuable in showing healthcare professionals the importance of supporting siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.
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| 6. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Being the Child of a Parent with a Life-threatening Illness: : Minor Children’s Self-reports on Illness-related Information and Family Communication
- 2019
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Konferensbidrag (refereegranskat)abstract
- Background: Open and honest communication between parents and children when a parent has a life-threatening illness seems to be important in helping the children in everyday life. Previous research on bereaved children shows that inadequate information and poor communication between family and professionals during the illness trajectory increase the risk for long-term psychological distress years after the loss.Aim: To explore minor children’s self-report of illness-related information and family communication when living with a parent with a life-threatening illness who received specialized palliative home care.Methods: This study used baseline questionnaire data from an intervention that aimed to open up for communication about the parent’s illness and support the family in their situation. A total of 48 minor children (aged 7-19 years) from 30 families were recruited from four specialized palliative home care units in Stockholm, Sweden. The questionnaire data were analysed with descriptive statistics.Results: All but one of the 48 children reported that someone had told them about the parent’s illness; however, two-thirds (32/48) wanted more illness-related information. When asked whether they could talk about how they felt or show their feelings to someone in the family, nearly half of the 20 children aged 8-12 years reported themselves partially or completely unable to do so. Half of the children in the same age group wanted to be able to talk and/or show more about how they felt. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask.Conclusion: Minor children of parents with a life-threatening illness want and request more communication about illness-related issues and their own feelings. To support these children, interventions should be developed that foster family communication and improve communication between family/children and healthcare professionals.
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| 7. |
- Eklund, Rakel, et al.
(författare)
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The family talk intervention in palliative care : a study protocol
- 2018
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 17:35
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Tidskriftsartikel (refereegranskat)abstract
- Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.
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| 8. |
- Frögli, Elin, et al.
(författare)
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Problems with task mastery, social acceptance, and role clarity explain nurses' symptoms of burnout during the first professional years : A longitudinal study.
- 2019
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Ingår i: Work. - 1051-9815 .- 1875-9270. ; 62:4, s. 573-584
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Symptoms of burnout among new professionals is a well-recognized problem but there is a lack of prevention programs. Effective interventions are based on an understanding of the processes that contribute to the development of a problem and suggest how it may be addressed.OBJECTIVE: Using the framework of organizational socialization, the objective of this study was to investigate if development of the socialization processes role clarity, social acceptance, and task mastery affects development of symptoms of burnout among new professionals and may specifically be targeted in transition-to-practice programs to prevent symptoms of burnout from occurring. We conducted this investigation by examining the relations between role clarity, social acceptance, task mastery, and symptoms of burnout the first year after professional entry, as well as the relations between changes in the socialization processes and changes in symptoms of burnout during the first three years following professional entry in a sample of new nurses.METHOD: Relationships between the socialization processes and symptoms of burnout were modeled using a linear latent growth model and data from a nationally representative sample of 1210 new registered nurses.RESULTS: Role clarity, social acceptance, and task mastery were related to symptoms of burnout cross-sectionally and longitudinally. Task mastery was the most important explanatory variable.CONCLUSIONS: The results suggest that an intervention designed to support the development of the socialization processes may be effective in preventing symptoms of burnout among new nurses. Interventions targeting role clarity, social acceptance, and task mastery during the first professional year may be expected to have effects during the following years as well, extending the value and importance of such interventions.
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| 9. |
- Hjorth, Elin, et al.
(författare)
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Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved
- 2019
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Ingår i: Journal of Child Neurology. - : SAGE Publications. - 0883-0738 .- 1708-8283. ; 34:2, s. 104-112
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.
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| 10. |
- Hjorth, Elin, et al.
(författare)
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Parents' advice to healthcare professionals working with children who have spinal muscular atrophy
- 2018
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Ingår i: European journal of paediatric neurology. - : Elsevier BV. - 1090-3798 .- 1532-2130. ; 22:1, s. 128-134
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.
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