Study Protocol: Intrafamily Communication on Mental Disorders (IFACOM)

Introduction

Mental disorders are still subject to tabooing or stigmatization in our societies and also within families.^1–3 There is evidence, that the lack of knowledge and education on the development and the course of mental disorders is associated with prejudice, skepticism and ignorance.² The stigmatization and tabooing of individuals with mental disorders can be associated with an additional worsening of their symptoms, the perception of shame and guilt as well as reluctance to seek help.^4–6 In consequence, tabooing and stigmatization play a key role in upholding barriers to accessing the healthcare system, e.g. when it comes to the underuse of mental healthcare services by mentally ill individuals or their relatives.⁷ The reduction of tabooing and stigmatization therefore remains a central challenge for healthcare professionals in dealing with mentally ill people and their relatives.^8,9 In general, stigmas or taboos are socially transmitted through direct or indirect communication and can then persist on an individual level in the form of intrusion or sometimes even lead to the reproduction of negative attitudes.¹⁰ Relatives of persons living with a mental disorder are also affected by this taboo and stigmatization. Health care services available to relatives are sparse and many of them are primarily aimed at training relatives and optimizing their interaction with the family member living with a mental disorder.¹¹ The fact that relatives of patients themselves need support often remains invisible.

Intrafamily communication plays a relevant role in this process and includes the disclosure or tabooing of simple information on mental health states or more complex phenomena such as the shared expression of feelings and experiences.^12–20 A well-known clinical example of this mechanism refers to the model of expressed-emotions, which indicates a negative influence of certain communication styles in the parental home on the prognosis of mental disorders of affected family members.²¹ According to this pathophysiological model, patients leaving the hospital after achieving remission or significant reduction of mental symptoms severity showed a deterioration of their condition when they entered a familial surrounding with unfavorable communication patterns.²¹ Against this background, intrafamilial communication patterns were postulated to be functional or dysfunctional, depending on their influence on the health outcome of the involved communication partners.²² This association of dysfunctional intrafamilial communication with poorer outcomes of mental disorders has been repeatedly described for clinical and healthy cohorts.^16–18 In coherence to this, taboo communication was associated with dysfunctionality and poorer prognosis, whereas open-positive or even humorous communication was suggested to be more functional and health-promoting.^19,23 College students showed lower levels of depressive symptoms and anxiety when they were subject to positive and less chaotic-disengaged family communication.^17,18 In the case of familial grief following a suicide of a family member, open and positive communication within the family was associated with a lower risk of symptom severity of depression in adolescents or general enhanced resilience towards the development of new affective disorders like complicated grief.²⁰ In line with the expressed emotions model of mental illness, dysfunctional intra-familial communication patterns have been associated with an increased risk of schizophrenia recurrence,¹⁶ whereas families with higher resilience and adaptability to mental health crises were found to use more affirming and supportive communication patterns.²⁴ Family based interventions for patients with psychosis already focus on the reduction of high expressed emotional or conflict-laden communication styles as one of their main treatment targets.^25,26 Family communication is also known to mediate the transgenerational transmission of traumatic experiences such as violence, natural disasters or wars from older generations to their offspring.^27–29 Further potential areas of research related to our research question extent to addiction, eating disorders and chronic pain.^30–33 Despite this fact, to our knowledge, assessment tools for intrafamilial communication on psychiatric disorders do not exist. As a first attempt, Radde and colleagues developed a questionnaire on intrafamilial communication on suicides offering a clinical tool for the assessment of communication functionality within families affected and the prognosis of suicide survivors regarding their own potential to develop suicidal syndromes.²³

The aim of our research project is therefore to develop a questionnaire on the intrafamilial communication on mental disorders. By creating the questionnaire, our study project aims to provide a diagnostic tool for the everyday clinical practice. It is supposed to identify patients at risk of dysfunctional intra-family communication and thus enable mental health care professionals to provide necessary and targeted therapeutical interventions. In addition, during our research process socio-demographic data will be collected to determine the extent to which certain socio-cultural factors represent a risk factor for the dysfunctionality of intra-family communication.

Protocol

In this research project, we plan to develop a questionnaire to quantify the functionality of intra-family communication about mental disorders through a multi-step procedure (see below Figure 1). A person living with a mental disorder, Andreas Jung, and a relative of a person living with a mental disorder and former co-chair and member of the Bundesverband der Angehörigen psychisch erkrankter Menschen (BApK) e. V. [Federal Association of Relatives of People living with Mental Disorders (BApK) e. V.], Heike Petereit-Zipfel, participated in the development of the study design. The questionnaire is supposed to consist out of factors and items including different communication patterns: The functionality of the communication should be measured via a Likert-Scale. This will be achieved through a mixed-methods approach including a deductive prior systematic literature review, an inductive research with n = 10 qualitative interviews and a final confirmatory factor analysis. Our procedure is based on previous experience in the development of a questionnaire concentrating on intrafamilial communication in families with suicides.²³ For this purpose, we will first conduct a systematic literature search to identify existing evidence on our research question. Potential keywords include “Family Communication” or “Parent-Child Communication” or “Interpersonal Communication” or “Family Relations OR Communication Patterns” or “Family Discussions” or “Family Dynamics” or “Family Talk” or “Intra-family Communication” or “Within-family Communication” or “Mental Health” or “Mental Disorders” or “Psychiatric Illness” or “Psychiatric Disorders” or “Depression” or “Anxiety Disorders” or “Bipolar Disorder” or “Schizophrenia” or “PTSD” or “Eating Disorders” or “Substance Use Disorders” or “Mental Illness” or “Psychological Disorders”. We found 5 692 hits for the search terms mentioned aboved on the 20th of July 2024 in the following databases: GoogleScholar, Cochrane Review, PubMed - Medline, OvidSP-Embase, Web of Science – Web of Science Core Collection, CENTRAL and EBSCOhost - PsycInfo (2000-2024). Information from included studies will be entered into spreadsheets by two researchers independently from one another. Disagreements will be discussed by the review team until consensus is achieved. In cases of missing data, we will contact authors of primary studies and request them for information, if possible. Our systematic review will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement.³⁴ The protocol for this review was registered at PROSPERO (registration ID 566469). The resulting factors and items will lead to the creation of a first version of the questionnaire and will be classified in terms of their functionality (e.g. open-positive) and dysfunctionality (e.g. taboo). Secondly, we will carry out semi structured interviews with 10 individuals with a history of mental disorders in their families to gain further evidence for potential factors and items of the questionnaire. Thirdly, on this basis, a first version of a questionnaire to quantify the functionality of intra-family communication will be developed. Fourthly, we plan to carry out a confirmatory factor analysis out of this questionnaire. For this, we will collect a sufficiently large sample of family members of individuals with mental disorders to apply the questionnaire for further confirmatory validation. Based on the methodological literature and the power analysis of prior confirmatory factor analyses, we estimate the sample size to be n=300 people.³⁵ During the entire research process, Andreas Jung as a person living with a mental disorder and Heike Petereit-Zipfel as a member of the Bundesverband der Angehörigen psychisch erkrankter Menschen (BApK) e. V. [Federal Association of Relatives of People living with Mental Disorders (BApK) e. V.] were involved in the development of the questionnaire.

Figure 1. The methodological approach to developing the IFACOM questionnaire.

All procedures had been approved by the local Ethics Committee of the Charité Universitätsmedizin Berlin Campus Mittee (EA1/312/24) and have been performed in accordance with the ethical standards laid down in the Declaration of Helsinki.

Discussion

As mentioned above, family communication about mental health has a significant impact on the development of mental disorders, their recurrence rate and further course and the distribution of mental health services.^{1,3–10,16–18} The aim of our research project is therefore to develop a questionnaire to measure the functionality of intrafamily communication on mental disorders. With the help of this questionnaire, we could offer a diagnostic tool to assess the risk of psychiatric patients affected by dysfunctional intrafamilial communication. Beside the early identification of potential risk factors our questionnaire could also serve to prevent mental disorders and enable mental health professionals to provide targeted interventions for vulnerable clinical subgroups. In addition, our project aims at fostering support services for family members that strengthen their communication skills without assigning blame or problematizing family systems.

Reporting guidelines

OSF: PRISMA-P checklist for “Study Protocol: Intrafamily Communication on Mental Disorders (IFACOM)” https://doi.org/10.17605/OSF.IO/DZBJ4.³⁶

Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).

Ethics and consent

All procedures involving human subjects/patients were approved by the Charité’s Ethics Committee (EA1/312/24). Probands will give written and informed consent.