Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

Abstract

The purpose of the study described in this chapter was to explore children's and parents' views of how a neurodegenerative disease in a parent influences the daily life of the child. Focus groups were carried out with nine families of children, adolescents and parents with and without Parkinson's disease, Multiple Sclerosis (MS) and Huntington's disease. Each group met twice over a period of 4 weeks. Data were transcribed and analysed using qualitative content analysis. The results explored the meaning of the two categories: consequences in daily life and influence of disease on children. These categories emerged out of the following subcategories: economy, responsibility, living with personal assistants, being and feeling, being different, activities and the symptoms of the disease. A parent's disease has an impact on the individual child who is affected emotionally and psychologically, and with regard to practical issues and basic needs. The parent's and the family's needs for support create a conflict between the child's rights for health, well-being and privacy and the needs and rights of the parent with the disease for high quality care. The negative impacts also relate to lack of information and knowledge about the disease and the family's need for economic support.

Burden and resources in caregivers of people with multiple sclerosis: A qualitative study

“…The subject is widely addressed in the literature [ 44 ]. Due to the emotional burden children suffer the often sudden need to front higher responsibilities and to be sometimes excessively involved in assisting the parent [ 45 , 46 ].…”

The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington’s Disease

“…To help with these emotional strains, facilitating peer support may, in some cases, be more beneficial than support from health or care services [8,9,19,29]. Lacking peer relationships and support through social activities may increase the risk of poor psychological adjustment, causing social isolation and stress [18].…”

“…The participants' interactions with available health and social care providers were also, often, described as challenging; many felt they had not received adequate or appropriate support, and they were often left frustrated by a lack of information and appropriate action from health and care services. Few studies have specifically investigated the provision of support for young people in families affected by neurodegenerative diseases [8,18,29], and results from past research have often drawn on small or very mixed samples [5,20,21]. Available research has, however, suggested that, despite a need for support, young people may still feel that the impact the disease has on their childhood is overlooked by the available services [8,18,19]; hence, although both formal and informal services are available, those services may not be provided to families affected by HD, as there is a lack of understanding and information available about the impact of HD can have on young people, which may lead to inappropriate or inadequate support.…”