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Why you should read this article: • To read about contemporary UK-based literature on fathers’ experiences of having a child with a learning disability • To recognise that having a child with a learning disability can affect all aspects of a father’s life • To appreciate the need for tailored support for fathers of a child with a learning disability. Children with learning disabilities often require greater levels of support from their parents than other children. However, there can be differences in the caring experiences of mothers and fathers. This literature review aimed to develop an understanding of fathers’ experiences of caring for children with learning disabilities in the UK. Analysis of seven UK studies identified two overarching themes – gender stereotypes in parenthood and loss of imagined future. Findings suggest that parenting a child with a learning disability can be a positive experience for fathers but can involve a journey through loss and grief before eventual acceptance of their child’s condition. Tailored interventions, such as male-only support groups, might help fathers as they move through this journey. [ABSTRACT FROM AUTHOR]

Aims The Care Act 2014 gives carers the right to an assessment of their needs and provides a structure for a more personalised approach to care and support. This study aimed to explore the perspectives of carers of adults with learning disabilities of the act, and examine the potential opportunities for, and concerns and misunderstandings about, its implementation. Methods A qualitative methodology was used, with face-to-face semi-structured interviews conducted with nine carers of adults with a learning disability. A coding framework identified elementary thematic patterns and formations, which were developed into more manageable sets of themes. These were refined and arranged to yield meaningful and potentially useful themes. The article focuses on one theme -- knowledge and implementation of the Care Act 2014. Findings All participants had heard of the act but none had received information about it from a learning disability healthcare professional, and believed it was difficult to find information about it. They recognised the significance of the legislation but their main concern was if, when and how its application would meaningfully affect their lives. Conclusion The enhancement of carers' status under the Care Act 2014 is an opportunity for learning disability professionals to practise more holistically and work collaboratively with carers, supported by legislation. Evaluation of the training of learning disability practitioners in how to engage with the act, and its effectiveness, should be undertaken to enable policymakers to enhance the potential for making, and sustaining, real differences to the lives of carers. [ABSTRACT FROM AUTHOR]

Raising a child with a profound learning disability and complex health and behavioural problems can be very difficult at times. However, when this is coupled with being a learning disability nurse, it brings about its own unique challenges. In this article I describe what life is like having Nia, and the emotions involved in being her mum and being a nurse. I also discuss the particular difficulties faced by parents of individuals who have a dual diagnosis of Down's syndrome and autism spectrum disorder. [ABSTRACT FROM AUTHOR]

Training staff and paid carers who support people with learning disabilities and challenging behaviour in the use of physical interventions has become accepted practice. However, parents and carers are often left to fend for themselves to manage equivalent behaviours. This article explains how the parents and main carers of adults and children with learning disabilities and seriously challenging behaviour can receive training based on the core concepts of a physical intervention model. [ABSTRACT FROM AUTHOR]

The article highlights the parents' workshops devised by the Torbay and South Devon National Health Service (NHS) Foundation Trust in England to improve parents' relationship with their child who has been referred to child and adolescent mental health services (CAMHS). It describes the non-pathologizing, non-judgmental program of the trust to foster parent-child relationship and discusses how parents gained insight into their own mental health and emotional well-being.

The author of this article, a nursing student, proposes a model of support for families in which children have been diagnosed with an autism spectrum condition. The proposed six-stage model, which is based on the author's personal experience as the mother of two sons who have autism, is designed to help parents move from the sense of bewilderment that often follows a diagnosis of autism to a sense of empowerment, thereby increasing the chances of normal life for their children. [ABSTRACT FROM AUTHOR]

This article is written from the perspective of a parent who has a child with autism spectrum disorder (ASD). My son has taught me that living with autism is simply another approach to life. I have learned a great deal over the years but attending a course on ASD at Edinburgh Napier University has reminded me just how challenging his life can be. The triad of impairments -- social communication, social interaction and imagination -- profoundly affect his life. The course on ASD has underlined the importance of reviewing our own behaviour and attitude towards those with ASD. [ABSTRACT FROM AUTHOR]

Having a stoma can be a difficult adjustment for the child or young person and his or her family. Children's stoma nurses provide support and education to the family at this time to help them come to terms with the changes this requires. This article discusses the different types of stoma, why a stoma might be needed, how the children's stoma nurse can help prepare the child or young person and his or her family for having a stoma, the practical aspects of stoma care and possible complications that might be experienced and how to manage them. [ABSTRACT FROM AUTHOR]

'Sam' was a six-year-old boy with medulloblastoma causing obstructive hydrocephalus and ataxia. Surgery, rehabilitation and possible long-term disability or neurological deficit were prepared for thoroughly by Sam and his family with the help of a multidisciplinary team. Full resection was successful but was followed by posterior fossa syndrome. His parents, who were under great stress throughout, were encouraged to communicate their concerns in a designated environment and to assist in their child's rehabilitation. A care plan ensured that they were involved with, but not overwhelmed by, his needs and the long-term prognosis. [ABSTRACT FROM AUTHOR]

This article refers to a personal narrative in which the parents of a child born with Down's syndrome, who subsequently required surgical intervention for a duodenal atresia, experienced a poor standard of care. It discusses how healthcare organisations can improve the service provided for such patients by making reasonable adjustments, setting up pre-admission services, introducing hospital passports and allocating acute liaison nurses to the parents, and urges all healthcare staff to sign up to Mencap's (2010) Getting it Right charter. INSET: Personal narrative. [ABSTRACT FROM AUTHOR]

The unique healthcare needs of children and their families living with Down's syndrome are identified; nurses must understand these to be able to help fulfil the person's full potential in life. The article also explores how working in partnership with the individual and family members can support optimal development. [ABSTRACT FROM AUTHOR]

The authors review the literature on the impact of autism in a child on parents, families and carers, and the stresses they face. Families who are resilient focus positively on autism as a new way of thinking and behaving that is not stigmatised as a destructive disorder. Children affected by it can sometimes be brilliant but difficult to cope with, and caring for them can bring about personal growth, strength and fulfilment in all concerned. On diagnosis, the children's nurse's role is crucial in providing caregivers with information about the autism, indicating coping strategies, sourcing numerous services and promoting acceptance of the condition. [ABSTRACT FROM AUTHOR]

Aim: There is increasing evidence to support the effectiveness of parent management training programmes with families of typically developing children. This pilot study assessed the validity of a modified version of the Incredible Years Parent Training programme as an intervention for parents of children with moderate to severe learning disability. Method: Five carers and four children completed the programme. A repeated measures design was used, incorporating observation to analyse changes in parent.child interactions, and self-report measures of perceived parent stress and child behaviour problems both pre- and post-intervention. Parent satisfaction was also explored. Results: The results showed a decrease in observed negative parent.child interactions and stress, and an increase in observed positive interactions. Conclusion: The Incredible Years Parent Training Programme may be a useful early intervention for some families of children with a learning disability. The effects on child problem behaviours were equivocal, and longer-term, larger trials are needed. [ABSTRACT FROM AUTHOR]

This article examines parental and family myths regarding children, with particular concentration on the child with severe developmental disabilities who may never be able to challenge their allocated identity. The case of 'Ashley, pillow angel' is discussed, alongside that of an Asian female child whose family created the myth that she was a boy to address cultural taboos that were preventing her father from being her principal carer. The use of myths of identity as solutions and problems in their own right is discussed. The article concludes that there is a need for professionals to question these myths. [ABSTRACT FROM AUTHOR]

Palliative care nursing practice can be enhanced if the clinical judgements made in applying palliative care philosophy to individual situations are critically examined and challenged. A model of reflection developed specifically for children's palliative care practice is illustrated here using a critical incident in which the parents of a child with complex disabilities were helped to reduce their caring role and accept increased support. As a result of the structured reflection, the importance of assessing for signs of stress in parents and the wider family was recognised. Additionally, the need for more research specific to the needs of families with more than one child with life-limiting illness was identified as a mechanism for improving the quality of care delivered. [ABSTRACT FROM AUTHOR]

The article discusses challenges and experiences of parents of a young person with severe learning disability. One study reveals that mothers and fathers have different adaptation to their child's disability. Also, there is a growing evidence that parents of severely learning disabled children experience differing levels of stress. All parents of severely learning disabled children valued the support provided by extended family.

The article focuses on the care of children with disabilities within the hospital or community setting. The objective is to provide an update on childhood disability in the context of healthcare. It also considers how the family reacts to the fact that their child is disabled. It demonstrates an understanding of the bereavement process and its impact on communication between families and staff.

The article reports on the move by parents of children of autism and learning disabilities to issue a plea to nurses in Great Britain. The parents talked about their experiences and struggles in taking care of their children with disabilities. They also shared their views on a lack of health and social care support in the country.

Social deficits and anxiety are common among people with autism spectrum disorders (ASD). The author reviews the literature and includes insights into how cognitive behaviour therapy can be adjusted to maximise its effects with clients. He concludes that community learning disability teams could use these interventions but that they will need additional training to meet the demand for such services. [ABSTRACT FROM AUTHOR]

Some children and parents find it difficult, if not impossible, to adhere to a prescribed occlusion regime for treatment of amblyopia. A nurse-run, one-day admission programme for non-adherent families was introduced in a paediatric ophthalmology ward. Non-adherence is addressed as a family predicament, rather than solely the child's lack of co-operation. This compliance-enhancing programme teaches simple positive parenting techniques, along with practical coping strategies. The aim is to nurture and empower parents, not undermine or patronise them, with the nurse as an ally not a judge. The programme has proved its effectiveness in educating children undergoing occlusion therapy and/or glasses wearing. Regular audits of visual results demonstrate good compliance and improved visual outcomes. Families report high satisfaction with the programme and a number have reported enhanced relationships with their children. [ABSTRACT FROM AUTHOR]

There are many things to think about when caring for a disabled child at home. Special, and often costly, equipment can be difficult to obtain and information on rights to benefits may not be readily available. Apart from the special needs of the child, carers often find that they have deprived themselves of their own basic personal needs, such as an adequate night's sleep or making the time for proper nutrition. Social activities are also difficult to fit in and the carer of a disabled child may find their friendships are harder to maintain. This article asks parents and carers what they feel would help them in managing disabled children with medical needs at home. Unsurprisingly, having a good community nursing team was seen as pivotal. The article calls for children's nurses to get more involved with issues of disability in helping to ease the burden of managing a child with special needs at home. [ABSTRACT FROM AUTHOR]

By the time this column is read we will either be in the throes of, or coming out of, the world-changing pandemic that is COVID-19. I trust and pray that you and your loved ones have remained safe at this time of challenge and uncertainty. [ABSTRACT FROM AUTHOR]

My son Jay has an intellectual disability, autism, cortical visual impairment and cerebral palsy. As a mother and an intellectual disability nursing student I am aware of how multiple disability diagnosis can limit social inclusion. His disabilities have left him isolated in life. [ABSTRACT FROM AUTHOR]

Growing up my daughter Rachael was identified with 22 conditions in the Diagnostic and Statistical Manual of Mental Disorders and probably about 200 that are not. My favourite was oppositional defiant disorder, which basically meant she said 'no' to people in authority a lot. [ABSTRACT FROM AUTHOR]

Parents of teenagers with behavioural problems feel isolated and receive little support but children's nurses can make a difference, as Cathy Wood explains. [ABSTRACT FROM AUTHOR]

The article discusses a study which examined how the parents of children with learning disabilities experience relationships. The research gathered data through an online YouGov poll and found out that these parents are more likely to be stressed in their relationships and consider separation or regret being in the relationship at all. Also identified are some options for the improvement of these relationships including short respite breaks and evaluation of parents and family carers.

The article discusses how to develop self-efficacy and resilience in parents in taking care of their children with learning disabilities.

The editor commends Alan Wilmott and his colleagues in the Torbay and South Devon National Health Service (NHS) Foundation Trust child and adolescent mental health services team in England for supporting parents of vulnerable children. He agrees with Wilmott's opinion on the influence of early life experiences on child development, the opportunity for parents to develop and grow alongside their children, and the possibility of fixing parent-child relationships.

This section offers news briefs on children's nursing in Great Britain as of March 2017 including study on parental care of children with complex needs, draft guidance published by the National Institute for Health and Care Excellence on developmental follow up of children and young people born prematurely, and statement issued by the Royal College of Nursing (RCN) and other organizations on the importance of childhood vaccinations to families.

A personal narrative is presented which explores the author's experience of caring for his first-born son John who was diagnosed with brain damage from birth and is undergoing permanent voluntary care under social services at the age of 39.

Professionals need to listen and learn if they are to meet the needs of children with disabilities and their families, as Annette Koshti-Richman found when she asked fellow parents about their experiences. [ABSTRACT FROM AUTHOR]

Explains that a report published by the Foundation for People with Learning Disabilities (FPLD) exposes many of the weaknesses in the provision of emotional and practical support for parents whose children have learning disabilities. Focus on examples of good practice in providing support; Examples of frustrated and disappointed parents, weak and disorganized services, and insensitive, ignorant individuals.

Focuses on calls on Great Britain's government to overhaul the help provided by statutory services to parents of children with profound and multiple learning disabilities. Proportion of time spent by parents on basic physical care; Amount of support given to families; Quality of services.

The author explains the importance of keeping promises and presents a personal narrative of her experience of trying not to break a promise to her daughter.

Abstract for "Mothers of Adolescents With Intellectual Disabilities: The Meaning of Severity Level" by O. Rubin and M. Schreiber-Divon is presented.

A personal narrative is presented which explores the author's experience of flying with her daughter Rachel for a holiday in DisneyWorld, Florida.

The article reveals that 85 percent of parents are worried about the level of support that their children will receive when they are no longer able to care for them, according to a research project undertaken by the Foundation for People With Learning Disabilities.

A personal narrative is presented which explores the author's experience of dealing with her daughter with learning disability, autism, Asperger syndrome and oppositional defiance disorder.

The article reports that children with autism say they do not receive the support they need from the National Health Service (NHS) and are turning to alternative remedies for which there is no clinical evidence.

The article presents abstracts on medical topics that include the focus of education on the strengths of children with attention deficit hyperactivity disorder (ADHD), the struggle of young people to understand their depression, and nurses positive attitude with self-harm patients.

The article reports that nurses should check the benefits of measles, mumps and rubella (MMR) vaccines for patients and thus, should be promoted accordingly.

The article presents research updates. It describes an article published in the Journal of Disability Policy Studies advocating for stronger work incentives in disability policies. A study analysing data from the Survey of Income and Program Participation found that single mothers of children with developmental disabilities faced harder financial conditions compared to married mothers of children with developmental disabilities, and single mothers who have children without disabilities.

A personal narrative is presented which explores the author's experience of coping with an autistic sister, a family that pretends everything is fine and the realization of its effects that include problems with relationships, lack of focus and personal fulfillment.

The article presents abstracts on the researches "'My Heart is Always Where He Is:' Perspectives of Mothers of Young People With Severe Intellectual Disabilities and Challenging Behaviour Living at Home," by J. Hubert, and "Predictors of Helping Profession Choice and Volunteerism Among Siblings of Adults With Mild Intellectual Deficits," by J. Taylor and C. Shivers.

The article discusses several research papers related to health care and published in various journals. A study published in "Archives of Disease in Childhood," has found that universal parenting interventions have little impact on behaviour problems. A paper which appeared in "Social Science and Medicine," has described the experience of parents of children with autism. It relates the findings of a study published in "Emotional and Behavioural Difficulties," which examined the social and emotional wellbeing of children in a single primary school.

This section discusses various issues of interest to people involved in the care of people with learning disabilities. The Social Care Institute for Excellence issued the "Ensuring Risk, Enabling Safety" report on the use of personalized budgets and balance risk and rights. Working Together With Parents (WTWP) created a web site to disseminate good practice guidance and promote the well being of parents with learning disabilities. Leicester Partnership NHS Trust and Royal College of Psychiatrist published a series of leaflets on mental health support.

The author comments on the article "Parents’ personality and parenting stress in families of children with spina bifida," by I.P.R. Vermaes and others in this issue. She suggests that the study lacked a suitable sample size. She mentions a lack of analysis of socioeconomic resources that relate to the psychosocial adjustment of families of children with long-term illness.

An abstract of the article "Parents’ personality and parenting stress in families of children with spina bifida," by I.P.R. Vermaes and others is presented.

The author discusses the challenge of having a child with learning disabilities. He highlights the burden put by children with learning disabilities on their parents. He also describes the interest of parents to find ways of coping with the problems they have to encounter. He cites the case of a girl with learning disabilities who underwent surgery to prevent her reaching puberty so that she would be easier to manage.