Support needs of parents diagnosed with cancer who have young children
Cherith Semple, Eilis McCaughan and Rachel Smith look at the importance of education to help frontline oncology staff support parents with cancer.
Parental cancer is not an uncommon phenomenon today, due to families postponing parenthood and an increased risk of developing cancer across individuals’ lifespan. Recent findings highlighted that up to one in five cancer patients are parenting children under the age of 18 years in the USA, equating to 1.5 million cancer survivors, with almost three million children (Weaver et al. 2010). Currently there are no comparable statistics in the UK; however, other figures demonstrate that 10% of people diagnosed with cancer in the UK are between the ages of 25–49 (CRUK 2016), an age range likely to be parenting young children.
Cherith Semple in practice
When a parent is newly diagnosed with cancer, this has an immediate and devastating impact for the patient and their family (Semple & McCaughan 2013). Parental cancer can pervade many aspects of daily life, creating multiple fears and uncertainties for parents about their future and how best to protect their children. Parents not only struggle with the duality of being a parent and a patient, finding it difficult to negotiate the disruption to family life while receiving treatment and managing the side-effects (Helseth & Ulfsaet 2005; Semple & McCance 2010) but confront the challenges surrounding how best to share their diagnosis with the children. A central premise for parents is a strong desire to keep their children safe from any harm or distress amidst the concerns of ‘finding the right words to tell the children’ and ‘who will look after them when I’m in hospital’. This is especially challenging in single parent families with a limited support network.
The effect on children
Healthcare professionals must be cognizant of the potential distress and psychosocial dysfunction that parents may experience, as parental distress effects their confidence and ability to support their children and therefore the children’s well-being. Children need to know that they will be loved, safe and cared for in order to maintain psychological resilience. Research on the impact of parental cancer on children has evolved in the past two decades. Many children who experience parental cancer will display resilience and cope with the impact of their parent’s illness (Osborn 2007). Despite this, other children will develop serious problems from this stressful event, resulting in separation anxiety, anger, depression, sleep disturbance, poor family cohesion and lower self-esteem (Morris et al 2016). Of note, parental anxiety accounts for the greatest variance in a child’s adjustment. The range and expression of these difficulties can vary depending on the age and sex of the child. For example, 6–12 year olds are more likely to experience greater somatic symptoms and teenage girls have the greatest degree of adjustment problems (Huizinga et al 2009).
Parents commonly worry that telling their children about their cancer would be too upsetting and cause distress but the well-informed child appears to have improved coping strategies (Huizinga et al. 2003). Moreover, children want information that is detailed and easy to understand from initial diagnosis, with ongoing updates throughout their parents’ illness trajectory (Semple & McCaughan 2013, Kristjanson et al. 2004). Parents are often the gatekeepers of pivotal information about their illness and they must be encouraged and supported to embrace an open style of family communication to promote coping and minimizes distress. Parents need to be educated to understand that children can cope with this information and being involved in family communication can help them feel more supported, secure and develop important life skills of empathy and resilience.
At the critical time point of diagnosis, healthcare professionals in frontline oncology roles are key providers of care and well placed to empower patients on how best to care for their children. However, within the literature, there is an overwhelming consensus that parents feel unsupported by professionals with limited advice provided on how to communicate with their children about parental cancer and manage family issues (Semple & McCance 2010, Elmberger et al 2000, Helseth & Ulfseat 2005).
The importance of education of frontline staff
Oncology professionals have a willingness to provide this help but often report significant challenges, to include lack of knowledge and confidence in their skills, feelings of inadequate preparation and support. Without adequate education, oncology professionals can experience greater emotional distress, which can have an impact on their wellbeing (Jenkins & Fallowfield 2002). To reduce the detriments of stress and burnout for frontline oncology staff, targeted education has proven to be an important tool in developing psychological resilience and positive coping for staff (McCann et al 2013, Boyle 2011).
The team working on the Family-centred cancer care project
Building on our previous research, we considered it pertinent to educate and equip frontline oncology staff to facilitate the delivery of this fundamental aspect of patient care. Consequently, 35 face-to-face education sessions were delivered across five NHS trusts in Northern Ireland, UK to 259 frontline oncology staff. The primary goal of this intervention was to increase healthcare professionals’ perceived level of confidence and competence to provide patient-centred communication and support for parents newly diagnosis with cancer.
Evaluation was conducted using a pre-post test design. Findings demonstrated that participants’ perceived level of confidence to engage in conversations with patients about parental cancer and telling the diagnosis to children improved significantly. Perceived competence scores also increased in how to handle difficult questions. Thus, providing focused education on managing parental cancer is likely to increase oncology professionals’ knowledge and confidence and it is anticipated that it would promote patient-centred communication and promote family cohesion. Recognising the far reaching ramifications of poor communication and lack of support for parents, underpins the need for an ongoing commitment from government to target education of oncology professionals on support needs of parents with cancer, as a key approach to improving family-centred patient care.
One of the children's drawings