| 1. |
- 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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| 2. |
- Eklund, Rakel, 1986-, et al.
(författare)
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A Mobile App for Prolonged Grief among Bereaved Parents : Study Protocol for a Randomized Controlled Trial
- 2021
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Bereaved parents have elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive behavioral therapy (CBT), both face-to-face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events of My Grief.Methods and analysis: We will conduct a two-armed randomized waitlist-controlled trial. Parents living in Sweden, who lost a child to cancer between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3-, 6- and 12-months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are posttraumatic stress and depression symptoms, quality of life, and cognitive behavioral variables (i.e., avoidance, rumination, negative cognitions).Ethics and dissemination: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.Trial registration: Clinicaltrials.gov, identifier: NCT04552717.
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| 3. |
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| 4. |
- 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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| 5. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Children's Views Are Not Taken Into Account in Accordance With Article 12 of the United Nations Convention on the Rights of the Child in the Family Talk Intervention When a Parent Is Cared for in Palliative Care.
- 2020
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Ingår i: Omega. - : SAGE Publications. - 0030-2228 .- 1541-3764.
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Tidskriftsartikel (refereegranskat)abstract
- Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child's right to express their opinion and have it respected in processes that affect them. The aims of this paper were to explore the child's active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Fieldnotes were taken during the programme and later analysed with interpretive descriptions. The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.
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| 6. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Daily uplifts during the COVID-19 pandemic : what is considered helpful in everyday life?
- 2022
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Ingår i: BMC Public Health. - : Springer Nature. - 1471-2458. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundKnowledge of what is uplifting and helpful during pandemics could inform the design of sustainable pandemic recommendations in the future. We have explored individuals’ views on helpful and uplifting aspects of everyday life during the coronavirus disease 2019 (COVID-19) pandemic.MethodsParticipants answered a brief, daily survey via text messages during 14 consecutive days in July–August, 2020. The survey included the question: “During the past 24 hours, is there anything that has made you feel good or helped you in your life?” We used content analysis to compile responses from 693 participants, who provided 4,490 free-text answers, which resulted in 24 categories subsumed under 7 themes.ResultsPositive aspects during the COVID-19 pandemic primarily related to social interactions, in real life or digitally, with family, friends and others. Other important aspects concerning work, colleagues and maintaining everyday life routines. One theme concerning vacations, going on excursions and being in nature. Leisure and recreation activities, such as hobbies and physical exercise, also emerged as important, as did health-related factors. Bodily sensations, thoughts, feelings and activities that benefited well-being were mentioned frequently. Lastly, people commented on the government strategies for containing COVID-19, and whether to comply with restrictions.ConclusionsTo summarize, daily uplifts and helpful aspects of everyday life centered around social relationships. To comply with recommendations on physical distancing, people found creative ways to maintain social connections both digitally and face-to-face. Social interaction, maintenance of everyday life routines, hobbies and physical activity appeared to be important for well-being.
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| 7. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Daily uplifts during the COVID-19 pandemic: What is considered helpful in everyday life?
- 2021
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Konferensbidrag (refereegranskat)abstract
- Background: Knowledge about what has been experienced as uplifting and helpful during the pandemic could inform sustainable pandemic recommendations. Objective: We explored individuals’ views on helpful and uplifting aspects of their everyday life during the COVID-19 pandemic. Method: Participants answered a brief, daily survey via SMS for 14 consecutive days during July-August, 2020. The survey included the question: “During the past 24 hours, is there anything that has made you feel good or helped you in your life?”. We used content analysis to compile the responses from 693 participants who provided 4490 free-text answers, which resulted in 25 categories subsumed under 7 themes. Results: Positive aspects during COVID-19 primarily related to social interactions, in real life or digitally, with family, friends, and others. Other important aspects concerned work and colleagues, as well as leisure and recreation activities, such as hobbies and physical exercise. As the data collection took place during the summer, one theme concerned vacation, doing excursions, and being in nature. Nevertheless, maintaining everyday life routines emerged as important. Participants also mentioned health-related factors. Sensations, thoughts, feelings, and activities that benefited wellbeing were frequently reported. Lastly, people were writing about the government strategies for containing COVID-19, and whether to comply with restrictions. Conclusions: Daily uplifts and helpful aspects of everyday life centered around social relationships. During recommendations for social distancing, people find creative ways to maintain their social connections digitally and face-to-face. Social interaction, maintenance of everyday life routines, hobbies and physical activity appears important for wellbeing during pandemics.
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| 8. |
- Eklund, Rakel, 1986-, et al.
(författare)
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Mobile App for Prolonged Grief among Bereaved Parents : Study Protocol for a Randomized Controlled Trial
- 2021
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11:12, s. e052763-
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Tidskriftsartikel (refereegranskat)abstract
- Bereaved parents, who have lost a child, have an elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive–behavioural therapy (CBT), both face to face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, calledMy Grief,in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events ofMy Grief.Methods and analysisWe will conduct a two-armed randomised waitlist-controlled trial. Parents living in Sweden, who lost a child between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content ofMy Griefcovers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effectivePTSD Coachapp. Participants in the intervention group will fill out online questionnaires at baseline and at 3, 6 and 12 months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are post-traumatic stress and depression symptoms, quality of life and cognitive behavioural variables (ie, avoidance, rumination, negative cognitions).Ethics and disseminationEthical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.Trial registration numberNCT04552717.
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| 9. |
- Eklund, Rakel, 1986-, et al.
(författare)
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My Grief App for Prolonged Grief in Bereaved Parents : A Pilot Study
- 2022
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Ingår i: Frontiers in Psychiatry. - : Frontiers Media S.A.. - 1664-0640. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- The death of a child is a devastating experience for most parents. Consequently, bereaved parents are at risk to develop physical and mental health problems, including prolonged grief disorder. Nevertheless, there is a lack of evaluated psychosocial interventions for bereaved parents. The primary aim of this study was to examine the feasibility of the My Grief app for bereaved parents. The secondary aim was to evaluate the potential reduction of symptoms of prolonged grief, depression and post-traumatic stress, and cognitive-behavioral processes proposed to prolong grief reactions. The study was a mixed-method open trial design, using pre- and post-intervention surveys and post-intervention interviews. Thirteen parents had access to the app for 4 weeks, eight parents participated in interviews and 10 parents answered the follow-up survey. The study provided evidence for the app's feasibility and acceptability, with participants reporting satisfaction with the app and stating that they would recommend it to parents in similar situations. According to the participants, the app was easy to use, the content gave a feeling of not being alone or weird in how one grieves, and the app gave a valuable overview of information, knowledge and further support. In addition, all parents expressed that an app like My Grief is needed and would be particularly useful to access early in the grieving process. Significant reductions of prolonged grief symptoms (d(within) = 0.86) and grief-related rumination (d(within) = 0.72), loss avoidance (d(within) = 0.95) and negative cognitions (d(within) = 1.36) from pre- to post-assessment were found. In conclusion, the app appears acceptable and feasible to use and will be evaluated in a larger randomized controlled trial (Trial registration number: NCT04552717, https://clinicaltrials.gov/ct2/show/NCT04552717).
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