Illness Terminal
Conditions
Keywords
Pediatric palliative care, Adult palliative care, Family Intervention
Brief summary
The overall aim of this study is to evaluate the effects and the implementation process of the Family Talk Intervention (FTI) in clinical practice when a child or a parent of dependent children has a life-threatening/life-limiting illness (cancer, neurological diseases, etc.). During 2021, FTI will be implemented in several different care contexts including a children's hospital and a university hospital in Sweden. Social workers will be educated in using the FTI in their clinical work. This study has a pre-post effectiveness-implementation hybrid design using mixed method. Data collection will be made using web-based questionnaires and interviews with families and social workers, and observations will be performed throughout the study.
Detailed description
The Family Talk Intervention (FTI), also called Beardslee's Family Intervention is a manual-based complex intervention and involves families who have children aged 6-18 years. The core elements are to support the families in talking about illness-related subjects, support the parents in understanding the needs of their children and how to support them, and support the families in identifying their strengths and how best to use them. The overall aim of this trial is to evaluate the effects and the implementation process of FTI in clinical practice when a parent or a child has a life-threatening/life-limiting illness (cancer, neurological diseases, etc.). More specifically, to examine the effects of FTI regarding family communication and psychosocial health among family members (Aim 1) and describe facilitating factors and barriers for implementing FTI in everyday clinical practice (Aim 2). The FTI has previously been pilot-tested in the context of specialized palliative home care with promising results. In pilot-tests, an assigned interventionist was used for intervention delivery, while in this continued trial, social workers will deliver the intervention as a part of their clinical work. This trial has a pre-post effectiveness-implementation hybrid design using mixed method. It will be placed at a children's hospital and at a university hospital in Sweden and conducted by all social workers working there (n=25). Education of social workers in working with FTI will take place during 2021 and families will be invited to the project from April 2022 and until power has been reached. Data will be collected using web-based questionnaires and interviews with families and social workers, and observations will be performed throughout the study.
Interventions
A psychosocial family-based intervention that is designed to give support to an entire family when a child has life-threatening illness.
Sponsors
Ersta Sköndal University College
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
Pre-post effectiveness-implementation hybrid design
Eligibility
Sex/Gender
ALL
Age
6 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Families that include a child with a life-threatening/life-limiting illness. * 2-3 months should have passed since diagnosis or relapse. * \<2 members of the family need to participate
Exclusion criteria
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Changed family communication from Family Adaptability and Cohesion Scale IV (FACES IV) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures family communication |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Changed resilience in children measured by the Resilience Scale for Children (RS-10), | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures psychosocial health for children aged 8-12 years |
| Changed symptoms of pathologic grief measured by Prolonged Grief Disorder (PG-12) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures pre-death grief |
| Generalized Anxiety Disorder (GAD) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures anxiety in adults |
| Changed resilience for adults measured by the Resilience Scale (RS-14) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures psychosocial health for parents/guardians and for children aged 13 years and older |
| Changed feelings of parental skill measured by the Parental Skill Questionnaire (SDQ) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures self-perceived parental skill |
| Changed key mechanisms to promote and inhibit implementation measured by The Swedish Normalization Process Theory Measure (S-NoMAD) | At baseline (after FTI education), four months later (follow-up 1) and 12 months later (follow-up 2). | Characterizes and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies and other complex interventions. |
| Changed organizational context measured by Alberta Context Tool (ACT) | At baseline (after FTI education), four months later (follow-up 1) and 12 months later (follow-up 2). | Measures organizational context for use in complex healthcare settings. |
| Changed feelings of strength and weaknesses in children measured by The Strengths and Difficulties Questionnaire (SDQ) | At baseline (before FTI starts), after the end of FTI/three months later (follow-up 1), and six months after that (follow-up 2). | Measures self-perceived strength and weakness. Parent Proxy for children under 11 years. |
Countries
Sweden
Contacts
Primary ContactMalin Lövgren, PhD
Backup ContactMaja Holm, PhD
Outcome results
None listed