Epilepsy is not just a single condition but a group of many different diseases with various underlying mechanisms with associated seizures [1]. A particular problem for people with epilepsy (PWE) is poor social support which can exacerbate problems caused by epilepsy and can lead to diminishing Quality of Life (QoL). An important goal in responding to the condition is enhancing support from partners, other family and friends. The stigma associated with epilepsy may create discrimination in employment and impact social relationships and activities.

This study is an Australian longitudinal panel study over 9 years. Upton and others [2–7] have argued the importance of social support for health, QoL, reduced mortality, and better seizure control [8–12].

Berkman et al. [13] argued the role played by the larger social structure needs to be included as it influences the roles of social support or social networks’ impact on health. “By embedding social networks in this larger chain of causation, we can integrate ‘upstream’ macro-social forces related to the political economy with social networks as mediating structures between the largest and smallest scale social forms” [13]. Berkman et al. and others also pointed out that not all support was positive and that social networks could also be destructive [13–15].

Lakey [16] described social support as three distinct types of support: perceived, enacted or received support, and then social integration. Jacobson [17] pointed out that while researchers counted numbers of supports persons received or wanted, they assumed that all individuals experience support the same way. The stressfulness of an event reflects an individual’s appraisal of it, rather than its objective attributes [17].

In this article, we take the insights from these authors to explore the role of supports for PWE, beyond enumerating them. We argue that the need for the type of support may change over time. Using data collected from Wave 2 (2010), Wave 4 (2016/7), and Wave 5 (2019/20) of the Australian Epilepsy Longitudinal Study (AELS), provides the opportunity to explore this. In the three Waves of the AELS there is data on education, employment, family relationships, support, self-efficacy, stress, stigma and the broader socio-political structure, self-reported health, and self-reported support experiences. This longitudinal data allows us to construct a dynamic model of the role of supports in the lives of PWE within the complex and changing social structural environment of Australia.

What has been found in this study that sets it apart is a greater understanding of the long-term effects of epilepsy on personal relationships and how this changes, over time (nine years). The qualitative component also drew on stigma, an experience requiring support, and on later use of professional help services to identify modes of support needed or utilised over time.

This study hypothesises the negative effects of epilepsy on relationships (partner, family, and friends) will diminish over time, while the need for support remains (Waves 2–5). We cite Manacheril et al. [18] who posit that a longer lead time in coping with negative social experiences affects QoL.

The AELS is a survey conducted every three years employing repeated measures to understand the impact of epilepsy on individuals. These repeated surveys are known as Waves. This is a panel study consisting of the same people from Waves 2 (2010), 4 (2016/7) and 5 (2019/20). Participants are recruited from the Australian Epilepsy Research Register (AERR) which commenced in 2006. Informed consent was gained from participants and ethics clearance was gained by Deakin University Australia (HREC 2013-011). There were no concerns about confidentiality. There are 51 of the same participants, all included in Waves 2, 4, and 5. The Waves 1 and 3 were not included as the sample size of the panel would be reduced to 15–20, precluding most forms of analysis. Also, these Waves did not contain all the support variables that the included Waves did. A flow chart (Figure 1) is included to show the years of data collection in this longitudinal study.

In Wave 5 of the AELS, the Medical Outcomes Study Social Support Survey (MOS-SSS) was used to measure the following social support dimensions: affectionate support; tangible support; emotional and informational support; and finally positive social interaction (PSI); to have fun with others/another. The scale showed internal consistency. That is reliability (Cronbach’s alpha) of the scales ranges from 0.91 and higher and inter correlations are 0.72–0.90 [19]. One item from the RAND Social Support Scale (MOS) is missing in our study due to a technical problem: item no. 7 in the Emotional/Informational Support Scale—‘Someone to turn to for suggestions about how to deal with a personal problem’.

Waves 2, 4, and 5 have variables consisting of supportive relationships with partners, family, and friends. For the analysis of the effects of epilepsy through support, scales were created for these three variables for Waves 2, 4, and 5. Wave 2 scale of supportive relationships had a relatively strong Cronbach’s alpha (where the same result would be expected with multiple samples) of 0.85, Wave 4 was 0.85, and Wave 5 was 0.87.

All three Waves contain qualitative responses indicating how people feel about living with epilepsy and where they seek support. These were analysed using grounded theory techniques [20, 21] by CW and CLP independently and then categorised according to the MOS-SSS social support dimensions. To build a dynamic model of support, both qualitative and quantitative data are situated in an analysis of the broader structure of QoL, education, and employment, and finally the overarching social structure and the changes impinging on responses from 2010 and 2019/20.

There are frequency analyses together with measures of percentage change in supportive relationships and other aspects of life affected by epilepsy between Wave 2 and Wave 4, as well as Wave 2 and Wave 5. These relate to measuring changes in the effects of epilepsy and support. Quantitative data analysis was undertaken using SPSS Version 27.0 (2020 Armonk. NY: IBM Corp).

The age range in Wave 2 is 20–75 years (see Table 1). These are the same people in all three Waves. The highest level of education, employment, and current non-employed status (such as retired) are all reported.

Analysis commenced with quantitative data. Overall, types of support, reported in Wave 5 (2019/20) were used as an analytic tool, mainly in the qualitative analysis.

The quantitative component of the study showed that the effects of epilepsy on supportive relationships diminished over time except for partnerships. These relationships (family and friends) were less affected in Wave 4 and even less in Wave 5. The study also showed that PWE received affection the most. It appeared that coping with the effects of epilepsy applied to family and friendships over time, as after 9 years the effects of epilepsy had diminished substantially.

Wave 2 clearly demonstrates that stigma plays an important part in where PWE seek support. This is from partners and family members, suggesting an avoidance of depending on support from broader community interactions. When available, PSI was valued but was confined to meet-ups with other PWE. The qualitative analysis supports the importance of affectionate support, while demonstrating that the demand for emotional/interactional remained a strong and unsatisfied need across the nine years. The transformative potential of emotional/informational support suggests that access to it would assist in building PSI and addressing social isolation.

The results show that in the Australian context, social support for PWE improved over time as other family and friends were less affected by epilepsy. However, for partnerships, the effects of epilepsy did not change. In Australia, there is relatively less emphasis on extended families and therefore support for PWE in countries where there are extended families may be different. Also, in Australia, there is good support from epilepsy organisations, and this may enhance the longer-term support and coping approaches of other family and friends. Stigma requires mitigation to reduce harmful effects. Australia is like many countries where support for stigma needs to be improved.

The quantitative analysis of the panel study focussed on the hypothesis: it is expected the effects of epilepsy on relationships (partner, family, and friends) will diminish over time (Waves 2–5). It was not supported. Our analysis showed that partnerships did not change substantially over the nine years, the effects of epilepsy on family and friends diminished strongly. Manacheril et al. [18] state a longer lead time in coping with negative experiences has an effect on QoL. In terms of stress, adjustment and coping the current study found that several supportive relationships for PWE were important in adapting/coping with the demands of epilepsy.

The quantitative results on types of support experiences by PWE in the current study show that affectionate support was the most evident while PSI was the least sourced. The extent of affectionate support is supported by the findings across all Waves of the robustness of support relationships (partner, family, and friends) in the context of reducing negative outcomes of epilepsy. Social support helps improve self-management, according to Walker et al. [3]. They found in qualitative research with 22 people that the main sources of support were spouses and parents. Later qualitative analysis in the current paper shows a greater need amongst PWE for emotional/informational support. Spouses and parents helped PWE through self-management [3]. Support for self-management occurred along a continuum and seizure control had an important role in PWE experience of support.

Lu and Elliott [4] found that poor social support is linked with poor mental health. This is through activity limitations as a result of epilepsy and inadequate social/emotional support. The negative effects of social support were when the receiver of that support felt uncomfortable or unwanted [5]. Poor social support was associated with depressive symptoms and that was stronger in those with lower income.

According to Gesselman et al. [7], intimate interpersonal relationships were both challenging but important to PWE. They have been linked to increased well-being and self-management, including positive QoL, mortality, and control of seizures. Zhong et al. [12] reported on their study in China that PWE who were married and those in employment had a higher level of social support. Schneidre [22] in an earlier qualitative study focussed on the outcomes of disabilities such as epilepsy for responsibility in everyday relationships and how this affects PWE’s thoughts and feelings about themselves.

Charyton et al. [9] maintained social support was related to QoL. They found in their US study that PWE with low levels of affectionate support reported fair to poor self-rated health. Zhong et al. [12] outlined that lack of social support affected the QoL of PWE. Other studies [8, 10, 11] also found low social support a significant predictor of poor QoL.

Mehta et al. [23] found in female, PWE in India, that low-income levels contributed to increased stress, poorer coping, and reduced family functioning. A Turkish study showed that PWE employed emotion focussed coping strategies with their epilepsy, religion being the foremost [24].