Key learning points:
· The effect child disorders/disabilities can have on a parent
· A father can have a huge influence upon their children’s lives
· How can a nurse support a parent who has a child with a disorder/disability?
Every child’s life is a special gift – as parenting evolves, they learn to adapt and change, as children will teach us more than we will ever aspire to teach them. Primary nurses and allied health professionals involved in the care of children and young people play a pivotal role in supporting them in their life goals.1,2 Ensuring every child receives high quality care based on their assessed needs, in order to maximise their full potential in their uniquely individual life-journey. Therefore, it remains vitally important that we as healthcare professionals work collaboratively to continually improve our practice and support families to help keep their children and young people safe.3,4
Primary nursing has many forms which encompass distinct fields of practice and various disciplines such as nurse practitioners, health visitors and community children’s nurses among others. However, they share a common philosophy that recognises the individuality of each child and their family, appreciating their unique needs and the role healthcare providers have in empowering children and families in decisions and the choices about their plan of care.3,4 Today parents of children with disabilities or a disorder such as autism,1diabetes mellitus,3,5 downs syndrome,2 or spinal muscular atrophy4 are demanding their children be more readily understood and accepted by society.
Having reflected upon practice and recent research studies this article will explore the effect child disabilities can have on a parent and how a nurse can support parents who have a child with a disorder. From their own clinical experience as children’s nurses the authors of this article recognise that having access to the most appropriate healthcare professionals and information that is sensitive, accurate and timely will make an immense difference to children and young people with a disorder or disabilities and their family.
The primary nurse may encounter infants, children or young people with a range of disorders or disabilities which require him or her to possess a range of skills and abilities to support the family and it may therefore be pertinent to consider definitions for these terms (see Table 1). Disorder in medicine relates to a ‘disruption of or interference with normal functions or established systems ‘(p546).6 Also, disability refers to a physical or mental impairment which has a ‘substantial’ and ‘long-term’ negative effect on the ability of the individual to do normal daily activities.7
Table 1: Overview of common disorders/disabilities
Primary care nurse
Disorders likely to be encountered
Disabilities likely to be encountered
|Diabetes Mellitus.||Technology-dependent children.|
|Neurological disorder e.g. epilepsy.||Life- limiting/life-threatening conditions.|
|Muscular atrophy – eg spinal, Duchenne’s.||Complex care needs – eg enteral feeding, tracheostomy, mobility dependency.|
|Down’s syndrome.||Learning disability; cardiac complications.|
|Cerebral palsy.||Mobility dependent; physically and or mentally disabled.|
|Asthma.||Life-threatening, lifestyle and environmental limitations.|
|Cystic fibrosis.||Life-limiting; immune-susceptible; socially isolating.|
|Autistic spectrum disorders.||Relationship and concentration difficulties; behavioural issues.|
|Mental health disorders.||Behavioural, self-perception, relationship, personality difficulties.|
The effect they can have on a parent
The ‘world’ of the infant or child revolves around the family, their nurturing and caregiving, supporting development and this role is largely entrusted to parents.5 This becomes even more poignant for the parents of a child with a disorder or disability; needing to develop knowledge, skills and expertise in managing their child’s condition.4 Parents caring for a child with a disorder or disability in the primary care setting can have a major impact on family life, which affects the entire family unit.1 The family may respond positively to the stress of the situation and develop closer bonds; consequently they may experience a negative impact leading to conflict or further distress.1,8 Indeed, there is an immense strain on relationships with marital confrontation, stress and dissatisfaction being recognised within past literature and current research, acknowledging long-term effects on the health and well-being of parents while caring for children with specific learning disabilities8 or complex health needs.9
Dads have been known to have a huge influence in their disabled child’s life and therefore play a significant role in improving outcomes for their child.1,10 Fathers sometimes appear ‘invisible’, yet they need to be involved and supported by the primary nurse.1 Furthermore parent’s questions about their child’s disability and care must be clearly answered, which can be problematic as diagnosis and verification of the disorder/disability trajectory may be a lengthy process and thus answers difficult to confirm.4 Additionally, children or young people with such disorders or disabilities may be capable of understanding difficult concepts and distressing information that is, if it is presented in an honest and accessible way.11
Points for consideration
1. Parents need to be positive role models for their children
Parenthood in itself is an overwhelming, challenging and emotional experience. Diagnosis of a disorder or disability may enhance this experience by creating devastating, conflicting and guilt-provoking feelings for the parents.3 Subsequently, the resulting ‘loss’ of idealised childhood and acceptance of a change of parenting journey will modify hopes and dreams for the child and family.2 In supporting their child, parents must deal with this personal grief while encouraging the child to reach for their dreams.4Furthermore, it is important to note that some parents may fail to recognise their child’s disorder or disability and thus not provide encouragement to them, yet many children become high achievers and exceptional in various creative activities such as music and sports.1,2
2. Parents should be honest with their children, answering questions they may have about their condition as openly as they can
Children may have an extraordinary ability to comprehend information about their health and well-being, when explained in understandable terms, at their cognitive level.5 In loving and trusting child-parent relationships, parents should maintain this trust by sharing information with the child in a simple, non-threatening and sensitive manner, with truth-telling at the core.11 Taking into consideration the cultural and religious beliefs of the family, when having potentially difficult conversations, may offer an additional source of support to the family unit.11
3. Parents must be recognised as experts in their child’s care and information shared accordingly
A child or young person in a family with a disorder or disability requires dedication from their parents, and with this they develop an expertise in their own child’s care. Discrete changes in their child’s general wellbeing and difficult behaviours will alert them to seek further professional guidance, if concerned regarding their child’s current health status. Primary nurses need to skilfully and proactively listen to and share information with parents, medical and allied health professionals, promoting a collaborative and coordinated response to the needs of the child and family.4
How can a nurse support parents
The primary care nurse has a pivotal role in caring for the child and family living with a disorder or disability, demonstrating a blended approach utilising key skills, duties and responsibilities to deliver a quality, family-centred service.12 In order to deliver effective, compassionate and competent care the nurse needs to establish and build quality, therapeutic relationships with the child and his or her family.13The child and family must feel supported and cared for by the primary nurse, while initially being professionally-led, over time this rapport should evolve towards a mutual, collaborative and respectful relationship, eliciting and responding to children’s needs and parents’ concerns.13
For parents who are coming to terms with news of their child’s health disorder or disability an added stress can be considering how to break this news to their child or what to disclose to their siblings.11 The family as a whole can be disrupted by the diagnosis, with siblings missing out on everyday experiences and opportunities, and subsequently adopting additional roles within the family.14 The primary nurse has an important role in supporting parents in developing a positive outlook on their child’s disorder or disability, as cultural traditions may influence the family’s view of their child’s condition.15
Public and community support for the family is crucial as parents tend to have limited opportunities to share their experiences with each other about their rights and need to gain support from friends and their extended family members.4 Parents need to be given up-to-date and age appropriate material to use when speaking to their child or family. Primary nurses can support parents talking to their child and are a rich source of information regarding local and specific parent groups and social support networks.11 Healthcare professionals must be mindful of information obtained by families via social media, while widely accessible it may need to be explored in relation to parent’s perception and children’s understanding of their specific condition.
Additionally, they must also help children and young people to make decisions about their care based on best practice. Subsequently, the most up-to-date evidence must also be considered, alongside the patient’s lifestyle, while being mindful of any language and literacy barriers that may exist.12
Primary care has been undergoing fundamental changes in relation to professional roles and boundaries within the community setting. Nevertheless, nurses continue to provide comprehensive care to children and families with disorders/disabilities across the lifespan within family healthcare teams. Although collaborative practice is evident, care co-ordination must be continually enhanced by ongoing changes in attitudes and support systems.
According to literature and research studies parents will grieve for the loss of a ‘normal childhood’ and over-protect their child who has a disorder or disability as they feel guilty and responsible.2,8 Additionally, siblings may need support as they also may experience feelings of being marginalised within the family or embarrassment associated with their sibling’s disorder/disability.14
Nurses working within family healthcare teams have a privileged opportunity to promote and support positive change among society in their attitudes towards children and young people living with disorders or disabilities. As change agents, health professionals such as primary nurses will no doubt face challenges and choices in developing quality, patient-centred services which are responsive to the changing needs of these unique children and their families in the 21st century.
1. Kenny J, Corkin D. The Challenges of Caring for an Exceptional Child. Learning Disability Practice 2011; 14(9):14-18.
2. Hughes L, Cardwell P. Care of a Child with Down’s Syndrome. Learning Disability Practice 2011; 14(10):14-17.
3. Cardwell P, Corkin D. Newly Diagnosed Diabetic. Ch. 31 In: Corking D, Clarke S, Liggett L (eds) Care Planning in Children and Young Peoples Nursing. Oxford: Wiley-Blackwell publishing 2012; 300-307.
4. Corkin D, Chambers J. Young Person with Spinal Muscular Atrophy. Ch. 35 In: Corkin D, Clarke S, Liggett L (eds) Care Planning in Children and Young Peoples Nursing. Oxford: Wiley-Blackwell publishing 2012; 343-351.
5. Kenny J, Corkin D. A children’s nurse’s role in the global development of a child with diabetes mellitus. Nursing Children and Young People 2013; 25(9):22-25.
6. Mosby’s Dictionary of Medicine, Nursing and Health Professions. 9th Edition.
St. Louis, Missouri: Elsevier. 2013;546.
7. Disability Discrimination Act. Definition of disability under the Equality Act, 2010. gov.uk/definition-of-disability-under-equality-act-2010 (accessed 18 November 2015).
8. Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, Tilford JM. Quality of life for parents of children with autism spectrum disorders, Research in Autism Spectrum Disorders 2014;8,1339-1350.
9. Whiting M. Children with disability and complex health needs: the impact on family life. Nursing Children and Young People 2014;26(3);26-30.
10.Dads Direct, Sneddon H. The Dad Factor in Northern Ireland: How Fathers Improve Child Outcomes; 2015. Briefing Paper. Belfast: Dads Direct.
11. Royal College of Nursing. Supporting parents and health care professionals when breaking bad news: RCN best practice guidance; 2013. London: RCN.
12. Nursing & Midwifery Council. The Code: Professional standards of practice and behaviour for nurses and midwives; 2015. London: NMC.
13.Smith J, Swallow V, Coyne I. Involving parents in managing their child’s long-term condition – a concept synthesis of family-centered care and partnership-in-care. Journal of Pediatric Nursing 2014;30:143-159.
14.Knecht, C; Hellmers, C and Metzing, S. The perspectives of siblings of children with chronic illness: A Literature Review, Journal of Pediatric Nursing 2015;30,102-116.
15.Chandramuki I, Krishnashastry V, Vranda MN. Attitudes of parents towards children with specific learning disabilities. Disability, CBR and inclusive development 2012;23(1):63-69.