Domestic violence and abuse experienced by people with multiple sclerosis

Topics for discussion

The webinar will discuss the experience of domestic violence and abuse for people with MS, where this information may be disclosed including what we need to be aware of if this happens, how we should support and who we should consider referring them onto. It will look at the evidence on where and when in a person's life this is most likely to occur and how we, as an MS community, can help identify early.

Kharis will outline the personal experience gathered through the interviews she has undertaken with her PhD in Leeds and Sue will talk through the healthcare professional experience and the themes that have emerged so far

There will also be a case study based discussion, so please do bring questions and comments for the speakers which you will be able to ask.

Objectives

• Discussions around where and when patients are disclosing this information, practical suggestions on how we can look out for this during appointments, how do we approach this topic if concerned and and where to signpost when disclosures are made
• How do social determinants of health, age and gender affect the personal experience of domestic violence and abuse in multiple sclerosis?
• Safeguarding - what does this really mean?

Summary

Domestic violence and abuse experienced by people with multiple sclerosis

People with disabilities are more likely to be the target of physical abuse, sexual assault and threats of violence – including domestic violence and abuse (DVA).

Kharis Hutchinson, post-graduate researcher at the University of Leeds, explained that disabled people experience unique forms of DVA, including impairment-specific abuse, which exploits any difficulties resulting from the person’s impairment. “Being reliant on an abusive partner increases disabled people’s isolation and dependency and hinders their ability to gain help,” said Kharis.

University of Nottingham post-graduate researcher, and former midwife, Suzanne Britt said that healthcare professionals (HCPs) wanted to help people affected by DVA. However, they often faced organisational constraints, such as limited time or resources, and sometimes lacked the necessary skills and knowledge, particularly around how to ask the question.

The patient perspective

As part of Kharis’ study, seven women with MS took part in semi-structured interviews, focusing on realisation, disclosure, access to support, ideal support, and the role of HCPs.

Preliminary findings demonstrated a pattern of coercive and controlling behaviour, with some women saying they were stalked and surveyed by their partner. Other themes included the use of children to manipulate, isolation from friends and family, and disguising abuse as care.

Kharis explained that many of the women had negative views of themselves, and this impacted their ability to realise they were experiencing abuse. “The narrative that disabled women should feel grateful for any relationship allows for problematic behaviour to either be ignored or not recognised,” she explained, adding that some women also expressed an internalisation of blame, viewing their MS as the reason for experiencing abuse.

“Significantly, the women expressed that their experience of domestic abuse had a negative affect on their MS, due to the stress and distress caused”

Kharis said

Support sources

Some women spoke about challenges in accessing support, with common difficulties including not knowing where to turn, long wait times for support services, and not being proactively referred onto services. Some, for example, were only given the name or the phone number of a relevant service, which, Kharis said, “fails to recognise the additional support and access needs of women with MS”.

While HCPs were not viewed as a first point of contact, of those who did speak to a healthcare provider, GPs and MS nurses were the most commonly discussed. The study found that GPs made the women feel believed and validated, but offered little in the way of practical support. In some cases, MS nurses provided practical support, but in others, the women felt the nurses “were not interested”.

When talking about the ideal support they would have liked to receive, being believed and validated, and conversations being private and free from judgement or personal opinions were found to be important for disclosure. The women suggested having posters with QR codes in MS clinics and infusion suites. They also highlighted the importance of proactive referral to services, and not being pressured into asking for support before they were ready.

The next stage of the project will take the interview findings into a series of workshops, during which the women will work with researchers to understand the ideal support journey.

The HCP perspective

Suzanne’s study involved semi-structured interviews with MS neurologists, MS nurses, rehabilitation professionals, and GPs. The discussions focused on perceptions around DVA, MS-specific concerns, the role of HCPs, experiences in practice, and views on training and resources.

Many interviewees said they had either had direct experience of people with MS experiencing physical, financial, emotional, or sexual abuse, or intentional neglect, or had worried that it might be happening. Most of the time, the people who came to them to talk about abuse were already known to external services.

“For me, the striking thing was the length of time people were in contact with their patients who were affected by abuse. HCPs were often involved with several agencies and coordinating multiple aspects of care”

said Suzanne, adding that this often had a profound affect on HCPs, who could experience fear of the perpetrator, anxiety and trauma.

Despite this, HCPs said they were able to provide a safe, less intimidating environment than other settings, as well as the regular contact needed to address DVA. In addition, they said they could use health-related pretexts to follow up on evolving concerns.

Addressing the issues

When asked about how they addressed DVA in clinic, the HCPs spoke about spotting clues, such as changes in relationships, and having trusted relationships and open and honest conversations with patients, as well as delving deeper into the information provided.

“It speaks to what many safeguarding professionals would call professional curiosity,” Suzanne said. “Very rarely will we be presented with a clear-cut picture… it is often a series of clues and indications that something may be amiss.”

Barriers to being able to help patients included a lack of time and experience and rigid safeguarding thresholds, burnout, and poor communication within teams and with other agencies. Conversely, having the time needed to talk to patients, support from managers, and clear pathways and lines of referral, along with the necessary knowledge, confidence and experience were all enablers.

Asking about DVA is difficult, but so are conversations about end-of-life care, sexual dysfunction, and suicide, said the HCPs. They advised colleagues to rehearse asking difficult questions, as spontaneous disclosure was rare, and to be familiar with local resources, pathways, and sources of support.

It is also important for HCPs to seek support when they need it. During the interviews, the HCPs spoke about formal routes, but also informal, such as speaking to colleagues.

Summing up, Suzanne presented the World Health Organization’s LIVES model for caring for women subjected to violence:

• Listen: listen closely, with empathy and without judgement
• Inquire about needs and concerns: assess and respond to emotional, physical, social, and practical needs
• Validate: Show that you believe and understand her
• Enhance safety: Discuss how to protect her from further harm
• Support: Help connect her to services and social support

“Remember that often people listen with the intent of answering, but we need to stop doing that. We need to ask what the person wants,” she said.