Introduction

Mental illness interferes with a family’s everyday life, and family members are reciprocally affected (Phillips et al., 2023). Families often play important roles in the lives of individuals who suffer from mental illness (Hinton et al., 2019), and the way the family unit responds to mental illness is influenced by their individual and family beliefs that both facilitate and constrain their lives, relationships, behavior, and suffering (Wright & Bell, 2021). People’s beliefs do not reflect the world as it is, but rather their construction of it. Beliefs construe a template through which people perceive themselves, others, and the world. With this template in mind, illness beliefs are continually evaluated against the backdrop of new information and experiences (Kube & Rozenkrantz, 2021). Despite these various lenses of belief, research has reported individually on patients and family members (Phillips et al., 2023; Lindgren et al., 2016), rather than as a unit. Beliefs can make people vulnerable, and in the context of mental illness beliefs, approaching the family as a unit in this study is particularly useful, as it attends to family identity, individual characteristics, and family dynamics (Galvin et al., 2019; Shajani & Snell, 2023).

Background

The family unit is comprised of individuals, but when one family member suffers from mental illness, this exerts an influence on other family members in one way or another in their everyday lives. The concept of family is not limited to the family as a structure characterized by blood bonds (Whall, 1986) but also includes significant others as part of the family.

Being in a family with persons suffering from mental illness involves experiences with family members becoming more understanding, discovering inner strength (Shiraishi & Reilly, 2019), feeling gratitude, and a sense of mastery and meaningfulness (Phillips et al. 2023). Yet this additionally involves negative aspects, such as concerns about the adult life of the individual suffering from mental illness and their future dependence on family (Andershed et al., 2017), continuous concern about care and relapse (Ntsayagae et al., 2019).

Parents of adult children with mental illness often find themselves in a dual role—as caregivers and emotional anchors (Aass et al., 2021). They are frequently expected to contribute to patient care, sometimes without adequate support or recognition (Lindgren et al., 2016). This can lead to feelings of being taken for granted, emotional exhaustion, and chronic worry (Johansson et al., 2019). Females in particular report higher levels of burden and anxiety (Phillips et al., 2023). Parental beliefs about the illness - its cause, controllability, and prognosis - play a significant role in how they cope and support their child (Reupert et al., 2021). These beliefs can either facilitate resilience or contribute to distress, depending on how they align with the realities of the illness and available support systems (Wright & Bell, 2021).

Siblings of individuals with mental illness often experience increased stress, emotional burden, and reduced well-being (Jayasinghe et al., 2023). They may struggle with feelings of guilt, responsibility, or resentment, especially when family dynamics shift to accommodate the needs of the ill sibling. Their own needs may be overlooked, and they may lack access to resources or support tailored to their unique position within the family (Jayasinghe et al., 2023). Despite these challenges, some siblings report personal growth, increased empathy, and a deeper understanding of mental health (Stein et al., 2020). However, these outcomes are highly dependent on the family’s communication patterns and the siblings’ own beliefs and coping strategies (Jayasinghe et al., 2023).

Spouses caring for partners with mental illness often experience a significant caregiving burden, including increased isolation and reduced leisure time. This burden is compounded by role-related stress, as they are frequently expected to maintain relational stability within the partnership (Phillips et al., 2023). Spouses who serve as primary caregivers may face heightened risks to their well-being due to the increased impact of emotional stressors. Their view, perspective, and beliefs about their spouse’s illness problems will determine how they will cope with their illness experience Årestedt et al., 2015). The influence of illness beliefs of families with an adult experiencing mental illness is mainly reported and described on an individual level. Ahuvia et al. (2024) describe patients’ causal beliefs as being linked to perceptions of personal control over one’s illness, and feeling like one has less control over their illness is associated with less effective coping and worse psychological outcomes. Barriers such as patients’ lack of awareness about mental health problems, options, and availability of treatment are described (Ahuvia et al. 2024). However, the notion of family members controlling an illness or illness situation in everyday life may be intertwined with the belief about what needs to be healed (Wright, 2017). Families often report that the burden of suffering is not limited to the individual with the illness but extends to other members (Shajani & Snell, 2023). This underscores the need to understand the family as a unit, where shared and individual beliefs about cause, control, suffering, and support shape the overall experience (Gisladottir & Svavarsdottir 2016, 2017).

Family members’ experiences are shaped not only by the illness itself but by the beliefs they hold about the illness (Wright & Bell, 2021). These beliefs influence how they interpret symptoms, assign responsibility, and engage in caregiving. How families’ responses to illness depend primarily on the beliefs they hold rather than the illness they suffer from or live with (Wright & Bell, 2021). Research on beliefs offers insights into cognitive processes of mental health and mental illness. It suggests that individuals with mental illness and those without mental illness differ not only in their beliefs but also in how they incorporate new information into these beliefs (Kube & Rozenkrantz, 2021). As a result, patients’ and family members’ illness beliefs have a facilitating or constraining influence on the family’s way of coping with and managing the illness experience (Wright & Bell, 2021).

Despite growing interest in family-centered care, research on family illness beliefs from a dyadic perspective remains limited. A dyad is a relationship between two individuals—such as a parent and child or two siblings—highlighting how their beliefs influence each other and the family system. In this study, the two individuals in the dyads contribute important illness beliefs from the family unit.

The dearth of knowledge regarding illness beliefs in family dyads emphasizes the importance of identifying family illness beliefs living with mental illness and comparing patient and family members’ illness beliefs to discover potential different needs and concerns. Enlightening family beliefs about illness and suffering is beneficial for both the families and healthcare professionals who guide the person suffering in managing everyday life (Wright & Bell, 2021). Because there are both individual and shared beliefs within a family, families need help to achieve mutual understanding (Shajani & Snell, 2023; Wright & Bell, 2021). Moreover, given support from mental healthcare professionals that are tailored to their situation (Gisladottir & Svavarsdottir, 2016). This study contributes to the field by exploring illness beliefs within family dyads living with mental illness. Understanding these beliefs can help healthcare professionals tailor interventions that foster mutual understanding and support within families (Shajani & Snell, 2023; Wright & Bell, 2021).

Aim

This study aims to describe and compare family illness beliefs of patients with mental illness and their family members.

Methods

Design

The study has a quantitative cross-sectional design and was conducted in the Norwegian community mental healthcare service.

Sample and Settings

In this study, families living with mental illness were the target group. Mental healthcare managers in 36 municipalities in Norway received information by mail about the study, together with a request for participants. Out of the 36 municipalities requested to participate, 15 agreed to recruit participants. The healthcare managers provided the email addresses of the healthcare professionals in community mental healthcare who could recruit participants. The recruiting mental healthcare professionals handed out information letters and questionnaires to patients suffering from mental illness, who could invite one significant family member who wished to participate. The paired samples in this study included a total of 66 participants—comprised with 33 dyads of patients and family members (Rayens & Svavarsdottir, 2003)

To participate, patients met the following inclusion criteria: i.e., 18 years old, facing problems and strain, with impaired function associated with distress, symptoms, and diagnosable mental disorders, with diagnosis not acquired, living with someone or alone, and receiving care and/or treatment from community mental healthcare services. Exclusion criteria for patients: cognitive impairment, psychotic state, active alcohol or drug abuse, or not being able to speak and read Norwegian. The patients who consented to participate asked family members to give their names and telephone numbers to community mental healthcare professionals, who contacted a family member and provided verbal and written information. To participate family members met the inclusion criteria >18 years old and were defined by the patient to be family members. Exclusion criteria for family members: cognitive impairment, psychotic state, active alcohol or drug abuse, or not being able to speak and read.

Data Collection

Patients and family members were informed by healthcare professionals in community mental healthcare about the study, both verbally and in writing. Patients and family members who gave their written consent to participate were requested to complete the questionnaire individually and to return it in a closed envelope by mail to the first author.

Data was collected using a questionnaire comprising a validated instrument, as well as questions regarding age, gender, and relation to the patient, and whether they attended family support sessions. An ID code labeling A for patients and B for family members made it possible to send reminders and to link patients and family members as paired samples in the analysis.

Measures

The Family Illness Beliefs Questionnaire–Norwegian (FIBQ-N) is a short, self-administered instrument consisting of one dimension with seven items. Each item begins with the phrase “I believe that …”, followed by statements such as “I know the cause of the challenges that we are now dealing with …” or “I know how much control mental illness has over my family…”. Responses are rated on a five-point Likert scale ranging from one (never) to five (all the time), yielding a total score between 7 and 35. A higher score reflects greater confidence in the patient’s or family member’s beliefs about understanding the meaning of the mental illness situation (Gisladottir & Svavarsdottir, 2016). This is of clinical relevance when considering family interventions aimed at facilitating mutual understanding.

The FIBQ-N was translated and culturally adapted from the original Icelandic version—the ICE-FIBQ—using a forward and back translation process inspired by Brislin (1970). The translation aimed to make the instrument suitable for use in Norwegian clinical practice and research. Face validity was tested by three individuals who completed the questionnaire and provided feedback on linguistic and cultural aspects, leading to minor rewording to better fit community mental healthcare contexts in Norway. A Benjamini-Hochberg Procedure (Benjamini & Hochberg, 1995) was used to control the false discovery rate, giving an FDR of 5%, due to performing many single-item comparisons. Internal consistency of the FIBQ-N was satisfactory, with a Cronbach’s alpha of 0.90, exceeding the commonly accepted threshold of 0.70 (Polit & Beck, 2024).

Ethical Approval

[name deleted to maintain the integrity of the review process] found that the processing of personal data in this study followed the [name deleted to maintain the integrity of the review process]. Ethical considerations included confidentiality, integrity, and the voluntary nature of participation (World Medical Association, 2018). Patients and family members were informed by mental healthcare professionals that participation was voluntary and could be terminated at any time. Patients and family members who gave their written consent to participate were requested to complete the questionnaire individually and to return it in a closed envelope by mail to the first author.

The STROBE Statement for cross-sectional studies checklist was used to report this study (Von Elm et al., 2007). (Supplementary file 1).

Data Analysis

Statistical analysis was performed using SPSS Version 29.0 (SPSS, 2022). Descriptive statistics with frequencies, mean, and standard deviation (SPSS, 2022) were used to describe the demographic characteristics of 33 patients and 33 family members. Questionnaires with 30% or more missing items were excluded before analysis. For the remaining questionnaires, imputation was performed with case mean substitution (Fox‐Wasylyshyn & El‐Masri, 2005). When calculating the FIBQ-N total score, due to being paired samples a total of 66 participants were included. Due to data at the ordinal level and a small sample size, non-parametric testing was chosen (Polit & Beck, 2024).

In respect of the demographic variables: age, gender, and relation to the patient, we chose to dichotomize when comparing groups (MacCallum et al., 2002). A Wilcoxon signed-rank test, with a matched subject design due to the specific criteria being a paired sample (n = 33 dyads), was used to compare the differences between patients’ and family members’ scores on FIBQ-N and ranking the absolute difference (Polit & Beck, 2024). To calculate a Wilcoxon test, the samples must be dependent. Dependent samples are present when data is obtained from so-called natural pairs, from people who belong together, as in this study, child/mother dyads or wife/husband dyads. Effect size was evaluated using the Cohen (1988) criteria of .1 = small effect, .3 = medium effect, and .5 = large effect. The significance level was set to p < 0.05 (2-tail).

Findings

Characteristics of Patients Suffering from Mental Illness and Their Family Members (n = 66)

Far more than half of the patients were between the ages of 18-39, with a median age of 28 years. Women were predominant (75.8%) among the thirty-three patients (Table 1). There was also a predominance (63.6%) of women among the thirty-three family members. Most family members were aged between 40-59 years, with a median age of 47 years. As regards their relation to the patient, most of them were related by bloodlines such as mother, father, sibling, daughter, or son. Notably, 42.4% were mothers. Concerning living arrangements among the patients, 36.4% lived alone, while nearly all family members lived together with someone. Regarding physical and mental health, a small number of family members reported poor physical (12.1%) and mental health (15.2%), notable with no differences as regard to gender differences in mental health status. Among patients, however, 30% reported poor physical health and 50% poor mental health at present.

FIBQ-N Patients and Family Members as Paired Family Samples (n = 33 Dyads)

Comparison between patients and family members as paired samples using a Wilcoxon Signed Rank test revealed significant differences on the total family illness beliefs questionnaire, i.e. the total FIBQ-N (p<.01) (Table 2), with patients (n = 33) with a total mean sum score of 25.64, while for family members (n = 33) there was a total mean sum score of 22,63. In total, family members report less reassurance regarding the cause of illness, control of illness, effect of illness on the family, illness suffering, and most and least helpful support received from mental healthcare professionals. By item level, significant differences between patients and family members within the dyads were found on item one; “I believe I know what the cause is of the mental health situation (problem) that we are now dealing with” and item seven; I believe I know what has been the least useful thing health care professionals have offered to help me and my family to cope with the suffering regarding mental illness” (Table 2).

Discussion

This study aims to describe and compare patients’ and family members’ illness beliefs. As most of the family members in the 33 dyads in this study were related by bloodlines such as mother, father, sibling, daughter, or son, within family dyads, researchers can explore their understanding of the challenges and needs of families navigating the impact of mental illness (Phillips et al., 2023). Still aware that dyads have varying degrees of symmetry and complementarity (Shajani & Snell, 2023). In this study, 42% of family members were mothers. Traditionally, women are more likely to be the main caregivers, to engage in more intense caregiving, and to report a higher caregiver burden and stigma (Sharma et al., 2016, Yin et al., 2020). Interestingly, evidence reports that both female and male family members, often parents, have similar levels of emotional distress and similar understanding of the illness, possibly reflecting increased gender equality (Onwumere et al., 2021; Sharma et al., 2016). Similarly, our study revealed no significant difference in mental health status among female and male family members.

Family Illness Beliefs within the Family Dyads

This study compares patients suffering from mental illness and family members’ illness beliefs as dyads. The findings show that family members scored lower on the overall total FIBQ-N than the patients. This suggests that family members may lack confidence in their beliefs about the illness. While this might not be surprising, it remains crucial to focus on these beliefs, as family members’ beliefs about the ill family members’ prognosis, diagnosis, or treatment, and healing can enhance or soften suffering (Wright, 2017). A subsequent possibility for some can be the emergence of constraining beliefs (Gisladottir & Svavarsdottir, 2016). Family members’ confidence and competence to respond to the needs of the one suffering from mental illness may be affected by their beliefs and determine how they will cope with the illness experience. Based on the findings of this study, it is reasonable to think that family members benefit from receiving information and knowledge. However, caregiving stressors influence how effectively family members can utilize information. Phillips et al., (2023) found that resources must be tailored to family members’ individual needs.

Significant differences within the dyads were identified, as the total FIBQ-N assigned family members lower scores; in addition, there were significant differences in two items. Family members score significantly lower than patients on what they believe is the cause of the mental health situation (problem) the family is now dealing with (item one). Beliefs about the etiology of illness often become a complex combination of causes, where psychological factors dominate (Wright & Bell, 2021). Nevertheless, how family members and patients understand the causes of illness and health influences their actions and activities. Another key fact to remember is that patients’ and family members’ beliefs and attitudes concerning the nature and causes of mental illness guide the likelihood of seeking treatment, the acceptance of treatment, and satisfaction with treatment (Carter et al., 2018). Beliefs of this nature can make it difficult for a family to establish functional coping with and adjustment to an illness (Wright & Bell, 2021).

What’s more, family members scored significantly lower than patients in their belief of what has been the least useful thing healthcare professionals have offered to help them cope with their suffering regarding the mental health situation (item seven), which uncovers potential uncertainty. Following the reasons above, family members’ beliefs can influence the patient’s decision to initiate or delay treatment, as well as treatment compliance and satisfaction with the treatment outcome (Wright & Bell, 2021). Nonetheless, research [name deleted to maintain the integrity of the review process] shows family members could benefit from a perceptual adjustment that brings their beliefs of suffering in line with the patient. It is, therefore, important that mental healthcare professionals play an active role in closing the gap that exists between them, the patients, and family members regarding mental health beliefs, knowledge, and information (Parnell, 2015). Mental health professionals in community mental healthcare are ideally positioned to assist family members with improving their ability to understand mental health information and problems through communicating about mental health and promoting the inclusion of family members in interventions (Moen et al. 2021).

Both patients and family members in this study scored the highest on the belief of who is suffering the most within the family (item five). Consequently, according to Wright (2017), along with suffering, people try hard to understand the suffering and to make sense of it, and suffering from illness invites many questions about why the illness has occurred and how it can be endured. Nevertheless, research shows patients living with mental illness withhold information to keep certain issues from their families to spare their family members (Landeweer et al., 2017). Furthermore, family members dare not ask and have their own beliefs about how seriously the patient is suffering from mental illness, and what the patient needs in situations that trigger severe symptoms (Aass et al. 2020). Certainly, an obstacle to the possibility of increased understanding of each other’s perspectives. Identifying distinct beliefs of family dyads in mental healthcare can inform how we approach families to target optimal outcomes for both patients and family members, which is not possible with “one size fits all” or individual approaches.

The patients’ and family members’ differences in responses (items 1 and 7), compared to consistency (items 2–6,) suggest a complex interplay between perceived knowledge, emotional impact, and lived experience among families facing mental health challenges. These findings underscore the importance of recognizing and addressing the nuanced perspectives within families, as they reflect not only differences in understanding but also the emotional and experiential dimensions that shape their responses to mental health challenges.

Methodological Considerations

The present study is a small sample size study with strengths and limitations. One major strength is that data on both individual and family member levels enable comparing them in family dyads. Even though the questionnaire used in this study is designed to be completed individually, the questions concern the family. The ICE-FIBQ is grounded and developed (Gisladottir & Svavarsdottir, 2016) to evaluate individual family members’ illness beliefs and applies as well to measuring illness beliefs in family dyads. Data from family dyads contributes an important portion of the family unit’s illness beliefs since families are composed of many subsystems, such as parent-child, marital, and sibling subsystems (Shajani & Snell, 2023). In the demographic description, we report living arrangements and the number of patients and family members living together with someone. Notably, we do not have information on who they live with, so in the sample, some of the dyads may live together, some do not. Self-selection recruitment may result in family members being very close to the patient, or not. Still, we regard our results as contributing valuable knowledge of family dyads.

Data collection at a family level enhances knowledge through shared family experiences and meanings that are expressed based on an experience of illness.

Concerning the generalizability of the findings, some caution must be acknowledged. A pertinent limitation concerns the study sample size. In this study, the response rate was low, despite two reminders, which might lead to a response bias (Polit & Beck, 2024). A large number of individuals were invited to participate, yet several refused. Why individuals refused to respond is unknown, since details of refusers were not collected. Nonetheless, a low response rate is not uncommon in studies of mental health services (Pinfold et al., 2019). An imputation procedure was performed to minimize response bias by replacing missing data points with the overall mean of that item. In this study, it was impossible to analyze the dropouts due to incomplete patient and family member registration by the services.

The FIBQ-N family members’ mean was overall lower than the one found using the baseline ICE-FIBQ measures with family members of children with ADHD and eating disorders (Gisladottir & Svavarsdottir, 2017; Gisladottir et al., 2017). probably due to the characteristics of the samples in each study, cultural reasons, and context (Gisladottir & Svavarsdottir, 2016). There are no comparable measures on patients or dyads.

Conclusion

In this study, the outcome of family dyads’ illness beliefs, the overall findings of family members’ lower total score of the FIBQ-N than patients, may indicate family members are less reassured than patients of their family illness beliefs about illness cause, control, effect, suffering, and support. These findings highlight the importance of mutual understanding in families and facilitate open communication to improve support. This calls for healthcare professionals to pay greater attention to assessing family illness beliefs in mental healthcare and offer family support conversations to support and strengthen family coping in the experience of mental illness. Leaders and educators in mental healthcare should place increased emphasis on education and skills training for nurses and other healthcare professionals who work and intervene with families.

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