Maternal cancer can be a challenging for adolescents (Su and Ryan-Wenger, 2007) and some can report more psychosocial problems and intrusive thoughts than those who have healthy parents (Morris et al., 2016; Shallcross et al., 2016). Previous research has suggested, however, that only some adolescents struggle (Krattenmacher et al., 2012), while other young people have gains from the experience such as maturity and appreciation for others in their lives (Davey et al., 2005). Parental cancer presents challenges for adolescents who are at a particularly demanding developmental stage as they are transitioning from dependent childhood towards independent adulthood (Lalor et al., 2007) and parental cancer instead draws adolescents towards their families (Finch and Gibson, 2009).
Literature on young carers supports this analysis, as the initial stages suggested that young people were involved in caring roles toward their ill mothers and shared characteristics with young carers. Young carers is a complex term that has evolved over time, from a medical model, to a social model of disability, and finally to a young carers perspective and a family perspective (Halpenny and Gilligan, 2004). Fives et al. (2013) suggests that young carers can be defined differently according to different epistemologies, however what is essential, is to create services targeted at responding to the needs of young carers that also take into account the rights of their ill or disabled parents.
Young carers research is focused on understanding the experiences of young people who provide support for an ill family member (Ireland and Pakenham, 2010) or a family or household member who is ill has a disability, addiction or requires other care (Fives et al., 2010). Caring for other family members is part of normal childhood development (Aldridge and Becker, 1999) but if caring demands exceed a certain level, it can lead to impairment in the child’s development (Fives et al., 2010). In this article, young carer is defined as: “children and young people…whose lives are affected in some significant way by the care needs of another family or household member and who provide care, or help to provide care, to that person” (Fives et al., 2010:1). This article is focused on adolescents’ experiences of transitioning from being cared for to becoming their mothers’ carers, suggesting that these young people share similarities with other young carers although they may have been in this role for shorter periods of time.
This study was part of a larger study that aimed to understand adolescent adjustment to maternal cancer (Rodriguez 2016). Participants for the larger study were invited to take part with two different methods. Firstly, mothers of adolescents attending cancer support centres were given information about the study and they informed their adolescents. Adolescents were invited directly through University emails. All participants received information sheets and consent forms.
This article is focused on the qualitative phase only, 15 adolescents completed semi- structured interviews and three interviews were purposefully selected for this analysis, as these were very detailed accounts of how adolescents transitioned from being cared to becoming carers of their ill mothers. Interviews were recorded, transcribed and analysed using Interpretative Phenomenological Analysis (IPA) (Smith et al., 2009).
Interpretative Phenomenological Analysis is a qualitative, experiential approach that is focused on understanding how people make sense of their lived experiences (Smith et al., 2009). IPA analysis consists of six steps: reading transcripts, initial noting, developing emergent themes, searching for connections among emergent themes, moving to the next case and looking for theme patterns across cases (Smith et al., 2009).
The three adolescents selected were: Fiona (aged seventeen) who was in the process of leaving home to go to university when she found out about the diagnosis. Caroline (aged nineteen) also moved away from her family home to attend university when her mother was ill. Caroline had to deal with her mother’s mental and physical illness simultaneously. Barbara (aged twenty) became her mother’s sole carer during her illness. Barbara struggled to attend university due to these additional responsibilities. Once the analysis of interviews was completed, the following themes emerged:
Becoming my mother’s mum
This theme describes the relationship between a caring daughter with her ill mother. One of the challenges faced by Caroline and Barbara was seeing the emotional and physical changes in their mothers. Adolescents recognised the severity of these changes and this motivated them to care for them. Caroline, for example, described that her mother became scared, vulnerable, in a state of desperation, trapped and claustrophobic. A mother in this state would be unable to provide care but instead required it.
...it was very upsetting to see your mother in such state like I mean that she was so vulnerable...I suppose she felt so trapped, claustrophobic...her behaviour was like someone that was really suffering... (Caroline)
Mothers unable to provide care was emphasized by Caroline as she described that her mother was unable to recognize her as the daughter and enact her usual maternal role and instead became like a vulnerable/ dependent child that needed to be comforted and taken care of.
I think it felt like the mother child relationships had reversed …I felt like I was the one kind of caring for her, I was the one making her feel better, she was the one crying onto my shoulder...she became a young child, a very vulnerable young child...I had to comfort her.
Barbara assumed the responsibility of her mother’s care on her own:
“I didn’t really think anything like that could ever happen but it did and…I took it on my shoulders more than anything”.
Fiona’s account is very different to the other two because she was physically separated from her mother and, therefore, was not able to become her mother’s carer. This made her feel very guilty as she was neither caring for her mother nor able to fulfil all her university demands.
“I felt guilty for being away … I’m away so I am not even fulfilling what I am supposed to be doing while I was away”.
Caring for their mothers required adolescents to surrender aspects of their own lives and their need to be cared for. The purpose of this was to avoid distress for their mothers and families. In this study, adolescents dealt with their own emotions by silencing them. Caroline, for example, described that she focused on her mother’s wellbeing rather than her own emotions;
We just felt that if we were to let our feelings be the main reason rather than what was best for her, that would be selfish of us...her wellbeing needed to come before our feelings.
Adolescents, in a caring role, also chose their mum’s needs over their own. Barbara described that even though she spent a long time with her mother in hospital, she was never offered any kind of help for herself and did not expect any,
I don’t think it’s about me when I go into the hospital, it’s about my mum and how she is feeling and how to make her feel more comfortable like I can’t expect people to be asking me like how I am feeling when there is you know a woman broken both inside and outside…
Overall, adolescents described that caring for their mothers was not a negative experience, this instead improved the relationship with their mothers by increasing intimacy and closeness;
“...I’d talk to her about anything and she’d do the same for me so it really brought us closer together” (Barbara).
The analysis described the role adolescents had as carers and the challenges they faced in the caring process. Adolescents struggled to come to terms with the shock of maternal illness but developed a sense of care towards their mothers, above and beyond their own needs and emotions.
Previous research has described that young people make sacrifices when dealing with parental illness and place parental welfare above their own emotional fears and anxieties (Aldridge and Becker, 1993; 1999). The effects of serious illness may be the motivation for adolescents to assume a caring role as dealing with maternal changes made them feel upset and confused. Similar to this study, research by Davey et al. (2005) described that adolescents perceived their mothers as more emotional and vulnerable and they made the decision to be more affectionate and get involved in chores and caring duties. In this study, prioritising a mother’s needs led to adolescents denying their own needs and emotions. Previous literature on young carers has emphasized the lack of open emotional expression in these young people, which can be a developmental risk as it can increase vulnerability, invisibility and isolation (Aldridge and Becker, 1993).
Overall, adolescents described that maternal cancer was one of the most difficult experiences they had but they could identify positive gains from it including more appreciation for their families. Abraham and Aldridge (2010) determined that carers can have positive benefits in their caring roles such as enhanced parent-child relationships. Aldwin (2011) described these gains as “tertiary appraisals”. Thoits (1995) suggested that ‘negative’ life events do not always have a negative impact on health and mental health, as people try to solve the problems they face and grow and learn from these ‘negative’ experiences or people may decide to change their situation and improve it, enhancing their well-being in the process.
This analysis attempted to expand the existent evidence for the concept of young carers which is currently focused on long term illness, excluding adolescents who experience a caring role over a limited time. There is paucity in the literature on adolescents who care for their parents with cancer as potential “carers” and this can lead to a lack of acknowledgment and validation of the significant care they provide. Fives et al. (2010; 2013) agreed that young carers are a hard to reach and invisible group, which, therefore, lack the appropriate supports to respond to their needs. Future research can benefit from a deeper understanding of the experiences of adolescents as “carers” to inform policy as to how to identify and respond to the needs of these adolescents that can be described as “temporary” carers but still experience challenges like long term carers do.
Caring for an ill family member can be a normal part of development but the challenges of maternal cancer can exceed normal developmental processes. Therefore, practitioners need to be sensitive to adolescents’ needs to ensure that assuming caring roles does not have a negative impact on their lives. Assuming additional responsibilities can be burdensome for adolescents at this stage. Maternal cancer implied another transition from being cared for to becoming carers for their mothers and families. Even though these transitions were challenging, adolescents showed great bravery, resilience and determination. Adolescents became a source of support for their ill mothers and families at a very challenging time even if they were still in need of care and support from their mothers at this age (Davey et al., 2005).
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Dr. Leonor Rodriguez, UNESCO Child and Family Research Centre, ILAS Building, NUI Galway, Ireland. Leonor is a Postdoctoral Researcher at the UNESCO Child and Family Research Centre. She has experience in health and clinical psychology working with families, children and young people that experience chronic illness in her native Costa Rica. Leonor completed her PhD in the School of Psychology, NUI Galway entitled:‘Understanding adolescent adjustment to maternal cancer: A study of personal experiences and psychological factors that promote adjustment’.
Dr. AnnMarie Groarke, Head of School of Psychology, NUI Galway. Dr Groarke, is a graduate of NUI Galway carried out research on cognitive and health psychology and was awarded MA and PhD degrees in the field. Senior Lecturer in the School of Psychology she was appointed Head of School in 2009. Dr Groarke was elected Vice Dean of the Arts Faculty 2003 - 2006. She was the Director of the MPsychSc in Health Psychology Programme from 1998 - 2002 and was Chair of the Psychological Society of Ireland Health Psychology Special Interest Group for a two year term. She served as National Delegate for Ireland to the European Health Psychology Society (EHPS) and served as a member of the Scientific Committee for the EHPS Health Psychology Society Conferences 2005 and 2006 and as Track Chair 2013 and 2015. She is a chartered Health Psychologist of the British Psychological Society. Her current research work examines the psychological impact of cancer.
Professor Pat Dolan, UNESCO Child and Family Research Centre, NUI Galway. Prof. Dolan is joint founder and Director of the UNESCO Child and Family Research Centre and Academic Director of the M.A. in Family Support Studies. He contributes to the undergraduate and postgraduate degree programmes of the School of Political Science and Sociology. Prof. Dolan holds the UNESCO Chair in Children, Youth and Civic Engagement. He has worked with and for families as a practitioner, service manager and academic for over 20 years. He has an extensive body of research on family issues. His major research interests are Civic Engagement, Youth Mentoring Models, Adolescent Resilience and Social Networks.
Dr. Padraig MacNeela, School of Psychology, NUI Galway. Dr Pádraig MacNeela is a lecturer and director of PhD studies at the School of Psychology, NUI Galway, and co-leader of the Community Engaged Research in Action research cluster at the Institute for Lifecourse and Society. His current research is focused on young adults’ experiences of sexual health, alcohol use, and gender. He also has expertise in studying illness and well-being from the perspective of both health care providers and patients. Pádraig’s research has included nurses, mental health professionals, general practitioners, community partners, and student services, and has had a particular focus on qualitative research methodologies.