Perceptions and Experiences of (Family Members of) People With Mental Illness About the Chance for Mental Illness in (Future) Children, and Needs for Care and Research (PANDAcc)

Perceptions and Experiences of (Future) Parents With Mental Illness and Family Members of People With Mental Illness About Risk for Mental Illness in (Future) Children, Potential Resilience Factors, and Needs for Care and Research

Despite consistent evidence that mental illness runs in families, intergenerational transmission of risk of mental illness is rarely considered in clinical practice. Neither preventive programs for children of parents with mental illness are usually implemented in care, nor supportive programs for parenting. Furthermore, parents with mental illness are not always aware of how their disorder may impact the well-being of their children. To date, the needs for counseling, care and research in parents with mental illness and family members of people with mental illness are unclear. Therefore, this prospective qualitative interview study aims to gain insights into the perceptions and experiences of (future) parents with mental illness, partners and family members of people with mental illness about risk for and resilience against mental illness in (future) children, as well as their needs for counseling, care and research.

Study Overview

• Status: Not yet recruiting
• Conditions: Mental Illness
• Intervention / Treatment: Other: No intervention will be used

• Study Type: Observational
• Enrollment (Estimated): 10

Contacts and Locations

• Study Contact: Name: Lisanne AE van Houtum, PhD; Phone Number: +31107037005; Email: l.vanhoutum@erasmusmc.nl
• Study Contact Backup: Name: Hilmar H Bijma, MD, PhD; Phone Number: +31107036109; Email: h.bijma@erasmusmc.nl

Study Locations

• Netherlands
  • Zuid-Holland
    • Rotterdam, Zuid-Holland, Netherlands, 3000CB
      • Erasmus Medical Center
      • Contact: Lisanne AE van Houtum, PhD; Phone Number: +31107037005; Email: l.vanhoutum@erasmusmc.nl
      • Contact: Hilmar H Bijma, MD, PhD; Phone Number: +31107036109; Email: h.bijma@erasmusmc.nl
      • Principal Investigator: Hilmar H Bijma, MD, PhD
      • Sub-Investigator: Neeltje EM van Haren, PhD
      • Sub-Investigator: Lisanne AE van Houtum, PhD
      • Sub-Investigator: Eline MP Poels, MD, PhD

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

The following participants will be included: (Future) parents with (a partner with) mental illness in the mood-psychosis spectrum (psychotic disorder, bipolar disorder, severe depression); ≥ 18 years old.

If including (future) parents with mental illness and their partners will turn out to be difficult given our timeframe, we will mitigate this by additionally including family members of people with mental illness, e.g. siblings or grandparents.

Description

Inclusion Criteria:

• Having (a partner or relative with) a diagnosis of a mental illness in the mood-psychosis spectrum, i.e., psychotic disorder, bipolar disorder, or severe depression
• At least 18 years old

Exclusion Criteria:

• Insufficient proficiency of the Dutch language
• No demonstration of adequate understanding of the purpose, procedures, risks, benefits, emergency contacts, and payment issues (in accordance with criteria to assess capacities to consent from Appelbaum & Grisso, 1988).
• Unable to give consent to all aspects of the study.

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

(Future) parents with (a partner with) mental illness in the mood-psychosis spectrum; The following participants will be included: (Future) parents with (a partner with) mental illness in the mood-psychosis spectrum (psychotic disorder, bipolar disorder, severe depression); ≥ 18 years old. If including (future) parents with mental illness and their partners will turn out to be difficult given our timeframe, we will mitigate this by additionally including family members of people with mental illness, e.g. siblings or grandparents.

Other: No intervention will be used; This is a qualitative study, no intervention will be used

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Themes around the topics (related to perceptions and experiences) explored.	We developed an interview guide around the main themes (i) risk and resilience; (ii) information needs for care and counselling; and (iii) (biological) research to ensure key aspects relating to perceptions, experiences, and needs of participants around the chance risk for mental illness in (future) children will be covered during the interviews. It additionally allows the interviewer to ask follow-up questions on interesting perspectives put forth by participants.	1 hour

Collaborators and Investigators

• Sponsor: Erasmus Medical Center
• Investigators: Principal Investigator: Hilmar H. Bijma, MD, PhD, Erasmus Medical Center

Study record dates

Study Major Dates

• Study Start (Estimated): March 1, 2024
• Primary Completion (Estimated): June 1, 2024
• Study Completion (Estimated): June 1, 2024

Study Registration Dates

• First Submitted: March 5, 2024
• First Submitted That Met QC Criteria: March 11, 2024
• First Posted (Actual): March 12, 2024

Study Record Updates

• Last Update Posted (Actual): March 12, 2024
• Last Update Submitted That Met QC Criteria: March 11, 2024
• Last Verified: March 1, 2024

More Information

Terms related to this study

• Keywords: risk; resilience; mental illness; qualitative research; offspring; mood-psychosis spectrum
• Additional Relevant MeSH Terms: Mental Disorders
• Other Study ID Numbers: ErasmusMC10365

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

IPD Plan Description

Only processed, group-level data (i.e., themes, subthemes) can be shared, given that interviews can be traced back to individual participants. The PI will verify the authenticity of the requesting researcher and will check whether their intentions are in line with the informed consent and whether the intended methodology is suitable and will approve the request before providing access to the data.

A Data Transfer Agreement will be signed, and the Technology Transfer Office will be involved to ensure the appropriate agreements are made.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No