|Ahead of print publication
Family functioning in psychogenic nonepileptic seizures: Qualitative study
Sneha Vinay Haritsa1, Kalapalli Jayasankara Reddy1, Meghna Gupta2
1 Department of Psychology, Christ (Deemed to be University), Bengaluru, Karnataka, India
2 Department of Clinical Psychology, Faculty of Behavioral Sciences, Shree Guru Gobind Singh Tricentenary University, Gurugram, Haryana, India
|Date of Submission||28-Dec-2021|
|Date of Decision||14-Jan-2022|
|Date of Acceptance||06-Feb-2022|
|Date of Web Publication||17-Jun-2022|
Sneha Vinay Haritsa,
Christ (Deemed to be University), Hosur Road, Bhavani Nagar, Bengaluru - 560 029, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Psychogenic nonepileptic seizures (PNES) are understood as epileptic presentations without a neurological basis. PNES has underlying psychological stressors that manifest physiologically. However, family functioning has been poorly studied despite its potential to be one of the major stressors. Few studies on family functioning have focused on differences between PNES and epileptic seizures than an in-depth inquiry into family functioning in PNES. Methods: Patients diagnosed with PNES by a psychiatrist or neurologist through home videos were chosen to participate in the study. Participants had at least one seizure in the previous week before the interview, and those who had physical disabilities or comorbid epilepsy were excluded from the study. In-depth interviews were developed and conducted. Determined data was analyzed through latent thematic analysis. Results: Based on the determined data, nine themes were identified. They included interaction and attachment, communication, structure and system, distressful family factors, expressed emotions, cultural aspects, maladaptive coping, adaptive coping, and negative emotional experience. Approach avoidance and hints of ending relationships were the types of communication among PNES patients, attachment has been inconclusive, transgenerational trauma, disengaged boundaries, coalition, and maladaptive triangles are prevalent among families of PNES patients. Over-involvement and hostility are the expressed emotions that were found. Both maladaptive and adaptive coping strategies are found among PNES patients. Finally, superstitions and beliefs in possession exist among families of PNES patients. Conclusion: Family dysfunction is prevalent among families of PNES patients, and hence, family-based interventions are necessary.
Keywords: Cultural aspects, expressed emotions, family functioning, psychogenic nonepileptic seizures, structural aspects, systemic aspects
|How to cite this URL:|
Haritsa SV, Reddy KJ, Gupta M. Family functioning in psychogenic nonepileptic seizures: Qualitative study. Ann Indian Psychiatry [Epub ahead of print] [cited 2022 Sep 30]. Available from: https://www.anip.co.in/preprintarticle.asp?id=347738
| Introduction|| |
Psychogenic nonepileptic seizures (PNES) are rigorously researched to understand the nuances of the disorder.,, Different types of psychological stressors have been identified. Family dysfunction was identified as a significant precipitating (62.7%) and perpetuating factor (54.2%)., Despite this finding, an in-depth inquiry into family dysfunction has not been made. Previous studies on family functioning have compared PNES and ES through scales on family functioning differentiating in PNES and ES patients., However, a need exists to explore family functioning that can hamper individuals with PNES. Specifically, interaction and attachment styles, structure and system of the family, expressed emotions, cultural aspects, and coping mechanisms were aimed to be studied [Table 1]. These were chosen as conflict, affective involvement, communication, and general functioning had significant differences among PNES and ES patients on McMaster Family Assessment Device and the Beavers Self-Report Family Inventory, and the researchers further wanted to explore these aspects in detail among PNES patients. Adding on to these, family functioning is a significant predictor of health-related quality of life among PNES patients. Hence, the authors decided to explore family functioning among PNES patients.
|Table 1: Objectives and anchor points based for development of interview schedule|
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| Methods|| |
This qualitative study was conducted in the year 2020–2021.
Adolescents and those belonging to early adulthood diagnosed with PNES were chosen. Patients with physical disabilities, including epilepsy as comorbidity, were excluded.
Individual semi-structured interviews were conducted to understand different aspects of family functioning. Once the guide was developed, it was validated by experts and pilot tested. After the pilot, the interview schedule was modified and validated by experts again.
Sampling and recruitment
Psychiatrists or neurologists referred the patients confirming diagnosis through home videos as these can efficiently diagnose PNES with 95.4% sensitivity and 97.5% specificity. These patients had reported at least one seizure in the prior week.
Thirteen patients were recruited, out of which four dropped out. Nine patients provided interviews. These were audio-recorded either in Kannada or Hindi.
Audio recordings were transcribed from Kannada and Hindi, translated to English, and then back-translated. All the transcripts were translated and back-translated for accuracy. Transcripts were thoroughly read to develop initial coding. After which, two researchers rated the codes based on the key themes developed [Table 2].
Ethical clearance was provided by The Centre for Research, CHRIST (Deemed to be University) with reference CU: RCEC/00131/3/20 received on March 3, 2020. Written consent was sought from both the participant and the parents (for adolescents) or a family member, and participation was voluntary.
| Results|| |
- Interaction and attachment - Both the ends of the interaction and attachment spectrum were found.
- Leisure time spent - Many families had a dedicated time that they spent for recreational activities or anything that was out of the routine.
“When he gets time. He will get time only on Sunday. I will be with him only on Sunday. He will not go to a job. He will be at home. He will take me outside like to temple and full Sunday we will spend time together. ” (Pt. 9)
- Time spent only during chores - Some families spent time only doing chores for each other such as cooking or helping another with their routine activities.
“I also enjoy it. Sunday Sometimes a full family will be nice. I Make something, give it to everyone.no, nothing, I will prepare food, will send children to school and all these.” (Pt. 3)
- Primary attachment exists - Patients had primary attachment whom they considered very close and shared everything.
“First father then sister and then mother. At first, I like my father. I will share everything with my father. No secret between us, we will all sit together and will discuss. ” (Pt. 9)
- No primary attachment - Some patients had no attachment with anyone and did not share any information with anyone.
“Since the beginning, this is how I have been. This problem also started like this only. This I could not tell anyone; also, there was a lockdown too, and I could not go out either. Like this only it happened. ” (Pt. 4)
- Communication - Patterns of communication indicated poor communication.
- Approach avoidance-approach-avoidance communication was found among some patients where one partner approached the problem, and the other constantly avoided it.
“If I have stress, I scold, especially if my husband hurt me. I shout at him, and after that, I just get on with the daily life chores brooming and sweeping. So I also keep quiet, and he will also not reply. He will remain silent, thinking that I always do like this”
- Hints of ending a relationship - The ending of conflicts was when the patient started communicating about ending the relationship.
“I told him that day itself that I won't stay with you; I'll leave you.”
- Structure and system - dysfunctional structures and systemic aspects were found
- Maladaptive triangles - patients also mentioned maladaptive triangles where a third party was involved in the conflict, and the problems escalated.
“Nothing. Any problem means my father-in-law's uncle was close with us. Close means only one bathroom, so we used to fight. I was asking for separate bathrooms and used to fight with them. I asked my father also. Will they build a bathroom or not, I asked? Before marriage, we will build, they told. Like that only I became pregnant. They told after getting pregnant, they would not put foundation, and they will not build a bathroom. I was quiet. After that, for delivery, I came here. One year I did not go there. Till they built bathroom and toilet room I will not go I told. I told my father. My father asked them, and they told me they would not build and started fighting”. (Pt. 9)
- Transgenerational trauma - Trauma that affects some members of the family unintentionally got passed on to their offspring affecting children's relationships.
“Nobody was there. He used to cry badly, saying that his mother also did not come to see him. My mother in law she is very different because she had suffered a lot with her husband, and towards the end, they used to lock her husband up in the bed. He had even got cancer, his mental illness had increased, and they used to tie him up. After going through all these, she has become somewhat different.” (Pt. 1)
- Disengaged boundary - disengaged boundary existed and hardly any interaction or communication was present with the family.
“If I am at my husband's home, I will look after my baby; I will complete my workaround at 11:30 am, and I will sleep till 3 pm. After 3 pm, I will come down and will have something and will speak a little and will start work again. I am least bothered about others. ” (Pt. 9)
- Coalition-patients also reported coalition, where the entire family was against the patient and left them out, especially during celebrations.
“My neighbor's house warming ceremony was there. Everyone went together leaving me. That time I felt bad. They all went leaving my baby and me. They are all one.” (Pt. 9)
- Distressful family factors - Other family factors that acted as stressors to the patients were found
- Distressful family conflicts - Distressful family conflicts were reported that sometimes lead to escalation of other problems in the family.
“Every day, they fight, especially my husband, my mother-in-law. My husband will say that she is not even my mother. She is totally different. She is somewhat…. From the beginning, she has been like that only. After she came, our problems also escalated.” (Pt. 1)
- Partner's abnormality - patients narrated several abnormal aspects of their partner that involved superstitions and possession that impacted the patient's mental health.
“The next day, when we were having dinner, he started behaving differently. He started telling that he was possessed by God, the devil, etc., By then, his father had passed away, and he was sitting like the way his father used to, and his eyes and all changed. I didn't feel this was normal” (Pt. 1)
- Abuse - abuse was another theme that was found, and physical abuse was very common that the patients faced.
“Then he dragged me, hit me, and threatened to kill me. Then he brought me back, pushed me aside, and went somewhere. I didn't know the place well.” (Pt. 1)
- Poor physical and sexual intimacy - patients reported being devoid of physical and sexual intimacy that they desired from their partners, and this added to their stress levels.
“Also madam, when he comes at night, he will be somewhat. Even if I ask him to come close to me, he will not. Then if I go and hug him, he will not let me. Whatever I do, he will not like.” (Pt. 8)
- Sexually inappropriate family member/s - Family members' sexual inappropriateness such as inappropriate behavior and dressing increased stress levels among the patients.
“Even now, at night, my mother-in-law, if the first night seen is coming on the television, she will be seeing it with more enthusiasm than us. She is already 70 years old. Even now until night 2 'o'clock…. One boy is there who takes care of the temple. She wants to sleep in the hall only. We tell her to fully cover herself and but a bedsheet, but she will sleep reverse and pull her saree up. When such a scene comes, I will be there, and the boy will see me in a weird manner.”(Pt. 1)
- Expressed emotions - These expressed emotions can act as stressors and devoid patients to adapt.
- Over-involvement-Many patients reported over-involvement of the family members denoted by providing physical and psychological care.
“They take more care. When it happened like this, I was not able to eat. They call me and wake me up to have something. No, only my mother-in-law and my husband will take care of here; my father, mother, sister, and brother everyone will take care of me. Yes, let baby eat, they say and wake me up, they hold my hand and wake me up, and they will help me to walk.” (Pt. 9)
- Hostility - there were also families that made comments rejecting patients' condition especially, about hiding health conditions before marriage that negatively impacted patients.
“They tell you have some problem before itself. Like this every time they say. But when the last time I got unconscious, they told us she had taken more stress, because of that may be like jaundice is there, they were seeing me and telling me that she has jaundice problem, her leg has become yellow, before marriage itself something is there. If I tell after marriage all these is happening then they say I am telling a lie, before marriage itself, she has some problem” (Pt. 7)
- Cultural aspects - Cultural aspects could impact healing reinforcing denial of psychological stressors
- Superstitious beliefs - superstitions were present in the family about the illness that reinforced denial of psychological stressors.
“There was an eclipse, and since I took a bath twice and overdid it and got cold, my husband is telling me all this happened. Because I do so much all this happens.” (Pt. 1)
- Belief in possession - patients also mentioned getting consulted by a faith healer who either mentioned possession by God or evil spirits.
“I mean they put spells on kids if they have fear problems. Like this is happening, they told for that GOD…If I do pooja for that, then it will be solved.” (Pt. 9)
- Maladaptive coping - these coping strategies used by the patients divert them from insight.
- Distraction - patients also mentioned distractive strategies that distracted them from existing stress providing temporary relief.
“Then I go above and play with the children. This or I will listen to songs on my mobile. This helps me overcome my sadness.”(Pt. 8)
- Avoidance pattern - in this strategy, patients remained silent or shut themselves from everyone.
“I don't do anything. I'll just sit. ” (Pt. 2)
“If it is too much, then I will cry and sleep. After that, I will be silent. I will lock the door, and I will sleep.” (Pt. 6)
- Behavior - Maladaptive behavior such as biting and beating were also found as responses to stress.
“I feel like biting when I get angry, I feel like biting” (Pt. 3)
“Simple fighting, he will say something that makes me angry, I will beat” (Pt. 3)
- Adaptive coping - these strategies help the patients with insight and in daily functioning.
- Logical Thinking - Patients also thought about existing conditions and gave themselves logical reasons to overcome the conflict.
“I only become alright madam. I will think that if I am not there, both my children will become orphans. I think like this, and then I will only become alright.” (Pt. 8)
- Solution-focused thinking - Solution-focused thinking was also seen among the patients denoted by “what they can do when faced with stress.”
“No problem for money. He earns more. We earn less than him. I want to learn to cut; I need a machine, I told. He said he would buy it. But the next day, like this happened. Till now didn't buy. I should recover, and I will be fine after that I will learn” (Pt. 9)
- Politely requesting - Patients requested their partners to stop the behavior without using any physical or emotional methods to forcefully control the other.
“Because he is the one who behaves in a hyper manner. I tell him that it's enough, do not talk. ” (PT.1)
| Discussion|| |
Interaction and attachment themes indicate both good and poor interaction, as both leisure time spent and time spent only during chores have emerged as subthemes. The attachment also shows both existences of primary attachment and no attachment. Although in the present study, these remain inconclusive, previous findings show that individuals with PNES can have insecure, unresolved/disorganized attachment. Communication includes approach-avoidance and hints of ending the relationship. Previously also, it has been found that PNES patients view their families as dysfunctional in communication. Maladaptive triangles, transgenerational trauma, disengaged boundaries, and the coalition have been found as themes in structural and systemic aspects. These have not been studied previously and are unique findings. Other distressful family aspects such as conflicts, partner's abnormality, abuse, poor physical and sexual intimacy, and sexually inappropriate members have been found. Of these, abuse has been researched well previously.,, The rest of the structural-systemic aspects need to be further researched. Expressed emotions from the family such as hostility and over-involvement have been found, and these have not been studied previously in PNES. These can hinder coping and act as stressors, too (especially hostile expressed emotions). Looking at cultural aspects, belief in superstitions and possession is common in many cultures for epilepsy also,,, and hence, for PNES which lacks medical etiology, it is definitely expected to be associated with both possession and superstitious beliefs. However, hardly any studies have researched cultural aspects that could reinforce denial about psychological stressors. In terms of coping, both maladaptive and adaptive coping have been found. Distraction and avoidance are avoidance patterns found in PNES patients previously. In addition, the maladaptive behavior theme portrays hostile behavior, and especially in the example (Pt. 3), beating, fighting, and biting have been found that are characteristic of PNES patients. Unlike previous findings, adaptive coping has been found. Previously, it was found that patients with PNES engage less in planning and active coping to overcome stressful situations. However, in our current study, subthemes logical thinking and solution-focused thinking indicate adaptive coping.
| Conclusion|| |
- Family dysfunction can act as a significant stressor for PNES patients. Poor communication, disengaged boundaries, maladaptive triangles, coalition, transgenerational trauma, and other distressful family factors can act as significant stressors
- Adaptive coping also exists among PNES patients that can be used as an asset in psychotherapy.
- Although this article highlights the existence of family dysfunction, resolving the same has not been pointed out
- The sample size is very small, and hence, it is advised to duplicate the study with a larger sample and in different countries.
- Family-based interventions are very important to patients with PNES for holistic well-being
- Cultural beliefs and expressed emotions should be paid attention to by clinicians to increase awareness of the patient and the family members
- Adaptive coping should be analyzed among patients by the clinicians, and it should be used as a strength during the therapy.
Authors are thankful to the hospitals, psychiatrist, neurologists, and participants for participating in the study despite pandemic. We are also thankful to CHRIST (Deemed to be University) for continuous support to scholars.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]