What do children need when a parent has MND/ALS?

1. What do children need when a parent has MND/ALS? Dr Rachel Tams and Dr Audrey Daisley Consultant Clinical Neuropsychologists MND Allied Professionals Forum December 2018

2. Disclosures: • Consultant Clinical Neuropsychologists • NHS Oxford Centre for Enablement (OCE) Oxford University Hospitals NHS Foundation Trust ( Psychological Medicine) • Lead for OCE Long term Neurological Conditions Service • (AD Lead for OCE Clinical Neuropsychology and Family Support Service) • Private practice • Specialise in working with families affected by progressive neurological illness • Via OCE - offer an innovative service for children who have a close relative with neurological injury/illness.

3. Expected outcomes: • To have increased awareness of issues affecting children who are living with MND in the family • To kick-start thinking about what good support for children might look like • To highlight the importance of further research, development of services and networking in this area

4. Familial MND - challenges to children: • MND presents family members with a unique set of adjustment challenges; It typically results in profound and complicated losses for the person affected and & their family (Hogg, Goldstein and Leigh, 1994; Cipoletta & Amicucci, 2015) • The psychological support needs of children who have a parent with MND have received little attention • We know little about how having a close family member with MND impacts on children • How children cope with the experience of MND in their parent • Or how best they can be supported

5. Research context: children • Clabburn & O’Brien (2015) Children caring for a parent with MND reported: • that they lacked information about their parent’s illness • issues in coping with changing family roles and the impact of their care responsibilities on education and social life. • Calvo et al (2015): Compared children with a parent with ALS (PALS) to children with healthy parents • Children with PALS sig higher risk of emotional/beh disturbance • 40% were in the clinical range for internalising symptoms (anxiety, depression, withdrawal, somatic complaints) • Findings consistent with wider neuro and health research (eg children of parents with MS) and cancer literature (e.g. Wong 2009) • Death of parent rated as greatest stressor in children (International Resiliency Project, Grotberg 1995)

6. Does this fit clinically? • Children – “hidden victims” – as in the research literature children also appear overlooked in service provision. Sparse research on children’s needs therefore guidance on how to support them is lacking • Key issues: (based on the small literature and clinical experience) • Understanding the diagnosis, its causes and its implications • Understanding and coping with the changes and gradual loss of the parent • Restriction of life experiences – e.g. studying closer to home than they had wanted • Fearing the reactions of others when the relative dies • Conflicting emotional responses – and little life experience to draw upon

7. Child-focused interventions in the context of familial MND: • NO published reports of psychological interventions – as evidenced in the systematic review carried out by Tams, Prangnell and Daisley, 2016) • This is surprising given the potential impact of MND on children • Pockets of innovation – eg Hope Loves Company USA. We are unaware of anything like this in UK. • NICE guidance (2016) places a focus on signposting families to help. But where and what? (similarly MNDA signposting/scoping exercise)

8. Service context and response: • What is available for families? • MNDA resources (eg ‘What is MND anyway?’) • MND care centres (variation in what is offered ?) • In Oxford OCE – offers comprehensive family support services but long waiting times • Hospice / palliative care • Child bereavement services (eg Winston’s Wish) • Young carers agencies • Few dedicated family support services / intervention programmes in the NHS

9. Child-focused support services- why are there barriers in this work? Very little has been written about professionals’ feelings towards working with children affected by familial neurological conditions. Our surveys of MS services and ABI services showed that: While almost all participants had favourable attitude towards this work the majority were not doing this. Main reasons: • Contextual (e.g. lack of support from colleagues / work culture / barriers from parents such as fear of upsetting children, fear of being judged as not coping / unaware of issues/services) • Practical (lack of time / money / access to supervision / training) • Personal / professional – anxiety, outside of professional role / expertise / training

10. What do children need? • Based on our clinical experience and wider (but related) research we know that the relationship between familial illness and how the child copes is complex! • Children’s responses can be mediated by a number of positive coping strategies • Having age-appropriate information is key but important to target other issues central to building resilience - connection, coping enhancement • Important to identify FAMILY info and support needs EARLY after diagnosis in order that we can help them build capacity to sustain themselves through the process (building family resilience)

11. One example of an intervention group for kids – “In the know about MND?” ? • We have been considering a possible group intervention for children with MND in the family • Based on ‘In the know about MS’: • Shifts focus away from problems to strengths • Place emphasis on resiliency and children learning from own and others’ experiences • Increase children’s understanding of MS • Connect children in similar situations with each other • Help children explore a range of coping strategies

12. Adapting ‘In the Know’ for children affected by MND in family: • Specific issues/differences to MS group: • Possibility of encountering more reluctance from parents to engage at time of crisis or wish to protect children from idea of death in family? • Timing of intervention? • Consideration of what child already knows of prognosis/how this is managed in group intervention • Consideration of follow-up/bereavement support • Facilitators’ own emotional reactions/support needs • Use of existing MND-specific resources

13. What should good child support in the context of MND look like? • Targets the key processes shown to be important in enhancing children’s resilience (knowledge, connection and coping) • Strengths (not problems) based – focusing on what assets, skills and resources children bring • Available from the point of the parent’s diagnosis through to bereavement support - and can respond to the changing needs of families as the illness changes • Support the parents and other family members on how best to support children • Shift away from children having to identify themselves as carers to access support

14. Our work with children affected by MND - what next? • We need extensive research to guide the content of all this work to ensure it is based on good practice and the child’s lived experience • We are seeking funding to carry out research into identifying the information and support needs of children affected by familial MND. • We also plan to survey professionals’ experiences/attitudes towards supporting children • We would like to build more extensive networks between services • ..and consolidate the link with HLC in the USA (HLC UK?!)

15. In summary: • Child relatives remain a hidden, potentially high risk group and their responses may be a potent ingredient in the family’s adjustment MND • MND services slow to address despite numerous possibilities for positive involvement of children • Positive relational outcomes can be achieved (and we should expect them!), especially positive personal growth in children • Challenge for us is to increase children’s visibility in service provision, literature, research & clinical practice

16. Questions / comments? Thank you for listening Any questions? Contact details: drrachel.tams@gmail.com audrey.daisley@yahoo.co.uk