A Family-Centered Intervention When a Parent is Cared for in Specialized Homecare
- Conditions
- Palliative Care
- Interventions
- Behavioral: Beardslee family centered intervention
- Registration Number
- NCT03119545
- Lead Sponsor
- Ersta Sköndal University College
- Brief Summary
The overall purpose of this project is to evaluate a family-centered intervention (the Family Talk Intervention, by W. Beardslee) in families where a parent of children aged 6-19 years is seriously ill and cared for in specialized homecare. The aims of the intervention are to increase family communication, the families' awareness of the impending death and their knowledge about the cancer illness, and thereby reduce the family members' long-term psychological distress.
- Detailed Description
The death of a parent is one of the most traumatic events that can happen to a Child. In our previous research, we have found that a lack of medical knowledge, communication and awareness of impending death increased long-term psychological morbidity among bereaved family members. Unfortunately, very few clinical interventions in palliative care have been conducted in Sweden.There is therefore a need to develop and evaluate interventions that aim to decrease the risk for psychological morbidity in families affected loss.
The overall purpose of this project is to evaluate a family-centered intervention (the Family Talk Intervention, by W. Beardslee) in families where a parent of children aged 6-19 years is seriously ill and cared for in specialized homecare. The aims of the intervention are to increase family communication, the families' awareness of the impending death and their knowledge about the cancer illness, and thereby reduce the family members' long-term psychological distress.
This study is a family-based intervention study among families where a parent of young children is seriously ill. It involves an intervention group and a comparison group. The two groups will consist of families where the seriously ill parent has at least one child in the age range 6-19 years. Around thirty families will be recruited by two interventionists through two specialized homecare unit in Stockholm and this is expected to take about 18 months. Families in the comparison group (N=30) will be recruited by a research member at two other specialized homecare units in the Stockholm area.
The effect of the intervention will be measured by questionnaires to both parents and children. Questionnaire data collection will be conducted before the intervention is started (baseline, for both intervention and control group). After two months there will be a follow-up for both groups. The next follow-up for both groups will be performed one year after the baseline.
In order to examine the meaning of the intervention for all family members and the study-feasibility we are planning to conduct interviews after meeting 5. Interviews with the whole family respectively each family members will be conducted.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 33
- At least one Child in the family 6-19 years
- Speaking and understanding Swedish
- One parent with severe illness or dying
- If the family is in need of interpreter
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description Beardslee family centered intervention Beardslee family centered intervention This Group will have the family centered program.
- Primary Outcome Measures
Name Time Method Self-reported family communication After five weeks from the start of the intervention Will be measured by interviews
Self-reported family communication, change over time Baseline (start of intervention), follow up 1 (after two months), follow up 2 (after one year). Will be measured using study specific questionnaires (6-7 years 26 items; 8-12 years 28 items; 13-19 years 52 items; patient 45 items; parent/other significant adult 54 items).
- Secondary Outcome Measures
Name Time Method Self -reported knowledge about the illness, change over time Baseline (start of intervention), follow up 1 (after two months), follow up 2 (after one year). Will be measured using study specific questionnaires (6-7 years 26 items; 8-12 years 28 items; 13-19 years 52 items; patient 45 items; parent/other significant adult 54 items).
Self -reported knowledge about the illness After five weeks from the start of the intervention will be measured by interviews
Self-reported psychological distress, change over time Baseline (start of intervention), follow up 1 (after two months), follow up 2 (after one year). Will be measured using questionnaires "The pediatric quality of Life inventory" (PEDS QL) (6-7 years 15 items; 8-19 years 16 items). "Generalized Anxiety Disorder Assessment" (GAD-7) for the adults (8 items).
Trial Locations
- Locations (1)
Ersta Sköndal Bräcke University College
🇸🇪Stockholm, Sweden