Managing childhood chronic illness: Parent perspectives and implications for parent-provider relationships.

Abstract

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer

“…These findings echo the broader literature on parenting a young person with a chronic illness, where parents report recognising and valuing the uniqueness of their offspring (Samson, Tomiac, Dimillo, Lavigne, Miles, Choquette, Chakraborty, and Jacob, 2009) and gaining an appreciation for what is important in life (Kratz, Uding, Trahms, Villareale, and Kieckheffer, 2009). Young people are said to be made vulnerable by illness not only because of their immaturity but illness can threaten what they will, or imagine they will, become in the future.…”

“…Parents have a responsibility in our society to protect and advocate for their children (Kratz et al, 2009) and in health care contexts they may be required to behave in ways that would otherwise be unacceptable in order to secure optimal care for their offspring, for example, by repeatedly challenging a doctors' capacity to diagnose an illness, demanding to see a particular doctor, or by threatening to escalate the situation. The role of parent brings these responsibilities in our society regardless of the age of the offspring or the disease with which he or she is diagnosed (Kratz et al, 2009). We do not know if parents continued advocacy and actions caused tension in the relationships between parents in our study and their offspring.…”

“…Yet parents attributed securing a diagnosis and optimal treatment to their own persistence. We know from work with parents of young people with a chronic illness that interactions with health care professionals can be distressing when they fail to result in satisfactory delivery of care (Kratz, et al, 2009). …”

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

“…Physical and social isolation are common themes expressed by parents of children with health needs including parents of children with other chronic illnesses, 123 autism 124 and mothers of extremely preterm babies. 125 Parents also talked about the stress associated with knowledge about their child's condition, in terms of feeling that they did not have enough knowledge, particularly in the early stages after hospital discharge, but also the burden of responsibility as the 'keeper' of the knowledge about their child's condition and the need to inform less knowledgeable professionals in primary care in particular.…”

Paediatric Health Professionals as Parent Educators: A Developing Role?

“…Driven by developments in UK government policy, culminating recently in the Children and Families Act (Great Britain Parliament 2014), and also by international health strategy (World Health Organization 2001), health professionals have increasingly been encouraged to adopt a more family-centred approach, empowering children and their families to assume a central role as 'partners' in a more collaborative process of goal setting and treatment provision (Kratz et al 2009, Law et al 2003, Tourigny, Chartrand, and Massicotte 2008. Indeed this is made explicit within the recently revised Health and Care Professions Council's standards of conduct, performance and ethics (Health and Care Professions Council 2016).…”