Violence in informal caregiving relationships
Research type
Research Study
Full title
Violence perpetrated by adults with severe mental health conditions against their informal carers: A qualitative exploration of carers’ and service users’ perspectives
IRAS ID
277449
Contact name
Juliana Onwumere
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 5 months, 1 days
Research summary
Research Summary The proposed study plans to qualitatively explore violence by adult service users living with severe mental health conditions against their informal carers. For the purpose of this study violence will be defined broadly to encompass various types of violence and/or aggression, including physical, sexual, verbal, emotional, and psychological violence, by people living with severe mental health conditions against their carer and/or towards property. \n\nIndividual semi-structured interviews will be conducted with: \n\na) Service users, diagnosed with a severe mental health condition (such as major depressive disorder, a bipolar disorder, schizophrenia spectrum and related psychotic disorders) who have a history of having behaved violently towards their carer, and;\nb) Carers of people with severe mental health conditions who have experienced violence perpetrated by the person they care for\n\nInterviews will aim to develop a detailed understanding of: \n1. Carer participants’ subjective appraisals and experiences of being the target of violence from the individual that they provide informal care for \n2. Service user participants’ subjective appraisals and experiences of having been violent towards their carer \n3. For carers and service user participants, the impact that violence has: on the individual; the dyadic relationship; and the wider family.\n4. For carers and service user participants, the types of involvement they have received from others (e.g. services, peers), and what they think about this.\n\nBy developing a more comprehensive understanding of the factors and/or situations that might either lead to, co-occur, or follow patient violence against carers in severe mental health conditions, the results of this study aim to inform the types of care and support interventions offered to families affected by this phenomenon. Specifically, the results are aimed at informing our understanding of the family factors and dynamics which can be used to either prevent and/or respond effectively to the psychological impact of violence exposure.
Summary of Results
: Violence perpetrated by adults with severe mental health conditions against their informal carers: A qualitative exploration of carers’ and service users’ perspectives
This study was carried out by a PhD student at King’s College London’s Institute of Psychiatry, Psychology and Neuroscience. It represents independent research part-funded by the National Institute for Health and Care Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust, and by King’s College London. The research was jointly sponsored by King’s College London and South London and Maudsley NHS Foundation Trust. The researchers have no competing interests to declare.
Study Background and Rationale:
Severe mental health conditions, including schizophrenia, bipolar disorder and major depressive disorder, affect several million people worldwide. Many of these people receive care and support from close others, mostly their relatives and, sometimes, their friends. We know that most people living with a severe mental health condition do not commit acts of violence towards others, and are more likely to be victims of crime themselves. However, some people living with a severe mental health condition do engage in violent and aggressive behaviours. When this happens, it is their relatives, particularly those in caregiving roles, who are most often the targets, compared to members of the general population.
However, this problem (referred to here as care recipient violence) currently remains overlooked and poorly understood by researchers, health care professionals, and policy makers. Consequently, this has left service users and their families with unmet needs in addressing the impacts of violence in their relationships and reducing future risk. An improved understanding of care recipient violence in severe mental health conditions is needed, in order to develop support which effectively targets the needs of affected families.Study Aims:
This study sought to develop a more detailed understanding of care recipient violence (which we defined broadly to include acts of verbal, psychological, emotional, financial and physical violence, as well as property destruction) by service users living with severe mental health conditions towards their informal family carers. Specifically, this study aimed to explore service user and family carer participants’ lived experience of violence and its associated impacts for themselves, their caregiving relationship and wider family. The researchers also intended to explore how participants have come to understand and cope with their experiences. Finally, we aimed to understand what support participants had received from formal and informal sources, in relation to their experiences of violence, and what they thought about this.Study Method and Analysis:
In order to carry out individual semi-structured with service user and family carer participants, interview schedules were developed by the researchers, and were informed by members of the target audience (i.e., two informal carers and one service user with lived experience of the topic being explored). The study was carried out during the period of September 2020 to January 2022 and, due to Covid-19 restrictions, all interviews took place remotely via telephone or videoconferencing platforms.With participants’ permission, all interviews were audio recorded and transcribed by the principal researcher. After transcription, recordings were safely and securely deleted. To protect participants’ anonymity, any identifiable information was removed or disguised, and pseudonyms were used. All transcribed interviews were analysed using Nvivo, a software package commonly used for qualitative analysis. The carer and service user interview data were analysed separately by carrying out reflexive thematic analyses.
Study Results:
The total sample of thirty-four participants comprised twenty-four family carers and ten service users.The carer sample was predominantly recruited through carer peer support groups from different regions across England. Most carer participants were middle to older aged females, who self-classified as White British. The majority were mothers caregiving for an adult child; predominantly a son. The sample also included three fathers, one brother, one sister, and one female spouse. Care recipients were mostly diagnosed with a schizophrenia spectrum or related psychotic disorder. Approximately two-thirds of the carer sample were not living with the care recipient at the time of interview.
The service user sample was recruited through one NHS trust. Participants’ self-classified ethnicities and ages were varied, however only one female took part. Most participants were diagnosed with a schizophrenia spectrum disorder. At the time of interview, one participant was an inpatient on a psychiatric intensive care unit, and nine were living in community settings. Three participants were living with their families, and the remainder lived alone or in hostels/supported accommodations.
Key Findings from Carer Interview Data:
Seven key themes and twenty-four subthemes were constructed through analysis of carer participants’ interview data. Participants reported having experienced a range of different, often co-occurring, types of care recipient violence. These included verbal, psychological, emotional, financial and physical violence, and destruction of property. Participants frequently reported that other relatives had also experienced the care recipient’s violent behaviour at times.The key findings highlighted that care recipient violence often came out of the blue. Being unsure of when violent situations might arise, and having a limited understanding about how to prevent situations from occurring and/or escalating was frequently discussed. This was described as adding to the challenges of providing care and support to a family member living with a severe mental health condition. Violent incidents were reportedly rarely discussed within caregiving relationships, and among the wider family, after they had occurred. Instead, many participants discussed being focused on moving forward. Fears of further violence were expressed by most participants, and this led to attempts to try to keep the peace and prevent further violence from occurring. Most participants reflected on having initially had a limited understanding about their family member’s violent behaviour, and having struggled to identify the cause(s). However, almost all participants discussed coming to understand the violent behaviour as being caused by the symptoms of the care recipient’s mental health condition. Care recipient violence was described as negatively impacting the mental health of participants, care recipients, and other relatives, as well as the quality of caregiving and family relationships.
Almost all participants expressed frustration and disappointment, due to the challenges they faced when trying to access mental health support for the care recipient. Due to the lack of professional help, the responsibility of supporting the care recipient was frequently described as being left to participants and their families. Often, when the doors to mental health support for the care recipient opened, this was only following multiple and/or severe incidents of violence. Most participants expressed the belief that the support provided by mental health services was too little, and came too late. Many also reported receiving limited/no professional help and support in relation to the care recipient’s violent behaviour. Participants did, however, emphasise the benefits of interacting with other mental health carers, who had shared similar experiences and understood something of what they were going through. Carer peer support was felt to be particularly important, given that many participants had gradually become distanced from their own support networks, due to the belief that their family and friends were unable to understand their situation.
Many participants discussed trying to find ways to cope with and begin to heal from their experiences of care recipient violence. For the majority, this involved repairing the caregiving relationship. However, a small group of participants described trying to accept the ending of their relationship with the care recipient. Although some participants discussed that the care recipient was in a better and more stable place at the time of interview, most described experiencing ongoing concerns and fears about the care recipient’s future and safety. Even among the small group of participants who reported that the caregiving relationship had broken down and ended, it was discussed that worries about the care recipient continued to feature in their thoughts. In this way, the findings highlighted that all participants remained invested in the life and wellbeing of the care recipient.
Key Findings from Service User Interview Data:
Six key themes and eighteen subthemes were developed through analysis of service user participants’ interview data. Participants’ violent behaviour towards their carer, and, for some, their other relatives, included incidents of property destruction, verbal, psychological and emotional violence, as well as incidents of threatened and actual physical violence.
The key findings highlighted that most participants believed their violent behaviour was mainly linked to living with a severe mental health condition, and the challenges and suffering they experienced because of their condition. Participants also discussed a range of factors which they felt had contributed to increasing the likelihood of them behaving violently towards their carer and other relatives (e.g., disagreements and tensions within their family relationships, use of drugs and/or alcohol). Many participants discussed that, in the build-up to violent incidents, they had been experiencing a range of negative emotions (e.g., frustration, hopelessness, anxiety), and felt that they had reached their coping limits. Therefore, violence was frequently described as happening suddenly, and was often triggered by a seemingly small event which caused participants to experience anger, rage and a felt loss of control.The key findings also spoke to the emotional rollercoaster that was experienced by participants, their carers and other relatives, after a violent incident had occurred. In particular, almost all participants discussed experiencing feelings of guilt, shame and regret, and this caused their mental health to worsen. Feelings of guilt and shame also prevented participants from feeling able to share details of what had happened with, and to seek support from, their close friends and wider family. Most participants reported that violent incidents were rarely discussed within the family after they had happened. Family communication was reported to be limited, and caregiving and family relationships were described as becoming strained and distanced.
Forgiveness, including forgiveness by others and by themselves, featured as a key theme in participants’ accounts. Many participants described how their experiences of guilt, shame and regret encouraged them to seek forgiveness for their behaviour from their carer and, often, their wider family. This often involved apologising, and making an effort to repair their caregiving and family relationships by engaging in better treatment of their family members. For many participants, forgiving themselves and seeking forgiveness from others also involved personal efforts to reduce their risk of future violence. However, a minority of participants were doubtful about whether forgiveness, by themselves and others, was possible. This was mainly linked to the belief that the damage caused by their violent behaviour could not be repaired.
Most participants expressed the belief that their violent behaviour, and the negative impacts this had on themselves, their carer and wider family, could have been prevented. However, mental health services were viewed as frequently missing opportunities to provide help and support to participants and their families. Although some participants discussed feeling grateful for aspects of the support they eventually received, many participants commented on the lack of support for themselves, their carer and other relatives. Therefore, all participants emphasised the view that mental health services needed to provide more efficient and better-quality care to people who are living with a severe mental health condition and dealing with issues of violence in their family relationships.
Implications of Study Findings:
This research improves our understanding of care recipient violence in severe mental health caregiving and family relationships; a problem which has remained hidden across all levels of society.The findings showed that care recipient violence can have a range of negative and far-reaching consequences for whole families. However, professionals often failed to directly ask about issues of care recipient violence and, therefore, missed opportunities to helpfully intervene and provide support to participants and their families. Participants also rarely asked for direct help and support around the violent behaviour from professionals, mainly due to their experiences of shame and fears of the potential consequences.
The findings therefore highlight the importance of increasing discussions about the issue of care recipient violence in severe mental health caregiving and family relationships among health care professionals, policy makers, researchers, and wider society. Continuing to shine a spotlight on this hidden problem will be key to further developing our understanding and awareness. Through an improved understanding and awareness, professionals will be better able to identify issues of care recipient violence. An improved understanding and awareness will also contribute to reducing the shame attached to family violence within wider society, and encourage service users, carers, and other relatives to seek help for their experiences of care recipient violence. Taken together, this will be essential to meeting the support needs of affected families.
REC name
Social Care REC
REC reference
20/IEC08/0014
Date of REC Opinion
18 Aug 2020
REC opinion
Further Information Favourable Opinion