In a new U.K. study, published in the journal Advances in Mental Health, researchers from the University of East Anglia (UEA) assert that young caregivers of parents with mental illness should be given more support as they move into adulthood.
The authors argue that services need to be flexible, combining both practical support — such as additional support to the parent as the child caregiver transitions out of the home — as well as emotional support for the young person and the parent to help renegotiate boundaries within their relationship.
The study explored the experiences of young caregivers who grew up with a parent with severe and long-term mental illness, and their understanding of their parent’s illness from childhood to the present day.
The findings reveal five key challenges for young adult carers: education and employment, relationships with partners, becoming a parent, making choices within their lives and maintaining boundaries with parents.
“The term young carer implies that the role stops once the child reaches maturity, but care for parents often continues into adulthood,” said study leader Dr. Kate Blake-Holmes, a lecturer in social work. “However, as young carers reach the age of 18 the acknowledgement and support for their needs falls away in many areas.”
“This study extends our knowledge of young carers’ experiences and support needs during the transition to adulthood and suggests the need for services to support parents so that young adult carers are able to make choices about their own lives.”
“Providing care for a parent is not in itself detrimental to a child; indeed it can be a positive experience, an expression of love and a thing to be proud of. However, it can become damaging if the level of care provided and the role and responsibilities attributed to the child fall far beyond what could reasonably be expected. If the child takes on an adult role beyond their developmental years it can negatively impact their own needs, coping skills and resilience.”
“While some individuals drew strength from their adversity, this study suggests that emerging adulthood may be more complex for young adult carers and they may have ‘grown up fast’ in certain areas while their emotional and psychological growth could have been delayed in others.”
For the study, the researchers interviewed 20 individuals, ages 19 to 54, from across the U.K. who had cared for and/or continue to care for their parents. For all of the participants, the complexities of the parent-child relationship and a sense of responsibility to provide care continued into their adult lives.
One participant had to leave university to care for her mother. Others were not able to follow their desired career due to their caring commitments. Several participants had difficulties forming and maintaining relationships with partners.
For one participant, the fear of becoming ill like her mother was so great that she asked her fiancé to sign a document giving him instructions and permission to leave her and have custody of any children should she show any symptoms.
Some of the participants made an active decision not to have children based on their experiences of parental mental illness, others planned to or had gone on to have children, but worried about the difficulty of balancing their children’s needs with those of their parents.
There are procedures already in place that could help young caregivers, such as the transition assessment, which the Care Act 2014 requires local authorities to conduct for those approaching 18. However, Blake-Holmes said these are rarely carried out.
“We need to push for these assessments to be done and to be having conversations with young people,” said Blake-Holmes.
“Everything points towards the patient, which is understandable, but we also need to include young carers in decision-making and meetings about their parents. They are the ones living with them and responding to crises, yet there is a fear of discussing issues with young carers because services feel it is inappropriate.”
“A lot of these people had really traumatic childhoods, but they still love their parents and their parents love them. Not everyone will have these experiences and this isn’t about saying the children or their parents should have been looked after elsewhere, but things could have been easier for these young carers and as adults it’s still impacting them now.”
“It’s about supporting these children, who are doing an amazing job, giving them the confidence to talk about their needs and ask for help, but also to support them in achieving their own goals.”
While all of the participants in the study spoke of negative experiences, several also spoke of gaining specific skills and strengths as a result. One participant felt her childhood experiences had enabled her to develop a “swiss army knife” of extraordinary skills and abilities that she could use to help others within her career.
Caregivers who felt they were most able to manage their parent’s ill health were those who believed that their relationship with their parent could be fluid, suggesting a level of resilience. They were able to draw close to their parent in times of need without fearing that they would become enmeshed and unable to go back to their own emotional needs, external commitments and aspirations.
This gave them a particular mindset which allowed them to adapt, not only within their relationship with their parent but also when faced with other stresses in their adult life.
In contrast, those who described themselves as fixed in the role of either “rejecting” or “rescuing” appeared most consumed by their parent’s illness and unable to manage the relationships necessary for successful transitions into adulthood.
Source: University of East Anglia