Abstract
BackgroundIn 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.MethodsThis 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.DiscussionThis 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.Trial registrationClinicalTrials.gov Identifier NCT03119545, retrospectively registered in April 18, 2017.
Highlights
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
Questionnaires To capture each family member’s experiences, we developed five versions of the questionnaires (Table 2)
The families can choose how and where the Discussion This will be the first evaluation of the modified version of the Family Talk Intervention (FTI) for use in palliative care
Summary
Support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The present study is the first to evaluate a modified version of the Family Talk Intervention (FTI) in specialized palliative homecare in Sweden and directly targeting families where a parent with minor children is severely ill. Guilt and fear of having caused the parent’s illness is common among children and adolescents living with a parent who is severely ill. These feelings may arise because of insufficient or unsuitable information for children. When children do not receive enough information regarding their parent’s illness or death, they often fantasize to fill in the gaps These fantasies are not Eklund et al BMC Palliative Care (2018) 17:35 always realistic and could exacerbate the child’s fear or worry [7,8,9]
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