Report: Parents Matter: the impact on parents mental health when a child has a life-threatening illness

Parents who have a child with a life-limiting illness can experience extreme stress and anxiety, often for many months or years.  This report sets out the particular challenges that they face at different points at a time of life that can be isolating and traumatic.

Rainbow Trust, 2020. Parents Matter: the impact on parents mental health when a child has a life-threatening illness

View summary or full report here

Report : The emotional impact of parenting a disabled child

This report was drawn together from a survey of 109 parents in the UK with a disabled child.  The survey revealed a range of emotions: anxiety, frustration, anger, guilt and jealousy.  It also revealed the growth some parents had experienced, the pride in their child  and a greater understanding and empathy.  A recurrent them was that there were positive and negative feelings, often within the same day.  The report includes a summary of the key points and the quantitative data.

Download report here

Web site: Affinity Hub - emotional support for parents of children with special needs

Affinity Hub is managed by Joanna Griffiths, chartered counselling psychologist and mother of a disabled son.  The aim of the web site is to provide a virtual home for parents and carers to realise they are not alone, with many other families going through similar situations.  Two pages that are particularly worth recommending are the Words of Wisdom pages - feedback and advice from parents, and the Feelings pages. 

New book: Bringing up babies and young children who have very special needs

This book is about the support children and families might need.  It describes the 3 essential elements of effective support: health, education and family support. It contrasts effective 21st century support with approaches that are out of date, and at worst insensitive and institutional.  

Limbrick, P. 2019.  Bringing up babies and young children who have very special needs.  Interconnections.

Contact the library for a loan.

Article: Perceptions and meanings associated with gastrostomies among parents of children with palliative care needs

This paper aimed to explore the decision processes parents face with their child having a gastrostomy and the meaning that parents build around them.  Parents of 48 children in a Spanish palliative care unit explore the struggle and emotions they experienced in terms of loss of normality and feeding their child.

Chocarro, L. et al 2019. A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative care needs.  International Journal of Palliative Nursing 25 (1) p 19 -28.

Contact the library for a copy

Report: 2018 - Off Balance: Parents of disabled children and paid work

New to the EACH Library, published in 2017, this report by Working Families surveyed 1,250 parents of disabled children during autumn 2017 followed by focus groups.  It explores the issues parents of children  with a disability face who wish to remain and progress in their jobs, and the difficulties they experience with this.

Working Families, 2017.  2018 Off Balance: Parents of disabled children and paid work.

Available to download

Article: Two futures: financial and practical realities for parents living with a life limited child

This study looked at the financial and employment situation that parents of life-limited children experience.  The first part of the article includes interviews with parents describing how their working and home lives are overwhelmingly affected by their child.  In addition, many families, after their child died fell into further financial hardship.  In the second part of the article, the author argues that from a moral perspective the state should financially supports families both prior and after their child's death, ranging from employment support, financial help and housing.

Rancall, D. 2017 Two futures: the financial and practical realities for parents living with a life-limited child. Comprehensive Child and Adolescent Nursing 40(4) p 257-267.

Contact the library  for a copy

Article: "It goes against the grain" the experiences of parents administering distressing procedures for their child at home

This study involved in depth interviews with 19 parents who were responsible for carrying out procedures they believed caused distress for their child.  Procedures included care and changing of nasogastric tubes, tracheostomy tubes, and oral and nasal suctioning.  The findings are presented around five key themes including emotional experiences and response, making sense of the role and changes in experiences over time.  Parents identified a number of ways they would like to be supported by healthcare staff with this responsibility.

Spiers, G., & Beresford, B., & Clarke, S. (2017)  "It goes against the grain" the experiences of parents administering distressing procedures for their child at home.  Health Expectations, 2017 online p1 - 8.

Contact the library for a copy

A shorter research summary report is also available from the University of York Web site:

Report: Hidden lives: tackling the social exclusion of families caring for a seriously ill child

The report by Together for Short Lives looked at the social isolation experienced by families with a child with a life-limiting condition. 52 families took part in the survey, with most saying they often felt isolated and their social life had suffered considerably because of their child’s condition. The reasons cited for not going out socially ranged from exhaustion to a fear of being away from their child.  The report also revealed continued social isolation for bereaved families. The 2nd part of the report surveyed the general public and demonstrated that a third of the public would be uncomfortable interacting with families with children life-limiting conditions.  It also revealed a lack of awareness of children's palliative care services including hospices and what they can provide.  A number of recommendations are made.

Together for Short Lives, 2018.  Hidden lives: tackling the social exclusion of families caring for a seriously ill child.

Download report here

Article: Cultivating resilience in families with a child with a life-limiting illness

This article looks at the resilience a family needs with a child with a life-limiting illness.  It looks at what resilience is - the successes and challenges, parental coping, child coping and strategies for developing resilient children with serious illnesses.  Written by the Director of Pediatric Palliative Care, at the University of Kansas, USA, and published in their e-journal for professionals and families.

Davis, K. 2018.  Cultivating resilience.  In:  CHiPPS E-Journal (Children's Project on Palliative/Hospice Services, E-Journal, May 2018.  Issue 51 pages 24 - 34.

For a copy of the article please fill out the online request form or download the full journal here

Book: Follow the child: planning and having the best end of life care for your child

Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside observations of how such things worked in her own family's story.

Langton-Gilks, S. 2018.  Follow the child: planning and having the best end of life care for your child.  Jessica Kingsley Publishers.

This book is on order and hoping to be available from 8th March onwards

Request a loan from the library

Article: It is what it is: mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions

The aim of this research was to establish the carers'/parents' experiences and support needs providing bladder and bowel care (B&BC) to a young adult.  The research involved 5 mothers providing this care to their daughters who were over the age of 18. While it was acknowledged as challenging by all participants, it was not a significant concern and seen as part of "it is what it is" with the associated themes of "whatever my daughter needs"; "Mum knows best"; and "coping with caring".  It was found it engendered closeness and opportunities for carers to provide better care than they felt professionals could.  B&BC was not a major issue when situated within the context of their daughter's disease.  The authors concluded carers' who wish to manage B&BC should be supported to do so.

Combes, S., Woodward, S. & Norton, C. 2017.  It is what it is: mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions.  International Journal of Palliative  Nursing, 23 (12) p 588 - 592.

Request the article via the online form

Article: Parents' experiences of living with, and caring for children, adolescents, and young people with Mucopolysaccharidosis (MPS)

Eight parents took part in this Irish study, with a range of MPS disorders, aged from 6 months to 22 years, with parents interviewed at 3 points over a 17 month period. The main themes identified  were described as living with MPS, the stigma of a rare condition, MPS as encompassing multiple diseases, an unknown future, hospital vs. home, the experience of waiting, a tough road ahead and things in their day to day life with MPS. Also included was the impact on their other children, the impact of their own physical and psychological well-being, and the stigma and isolation of living with a child with a rare disorder.   The study highlighted the impact that a disease that is chronic, progressive and degenerative can have on all dimensions of a family's life.

Somanadhan, S. & Larkin, P. J. 2016.  Article: Parents' experiences of living with, and caring for children, adolescents, and young people with Mucopolysaccharidosis (MPS).  Orphanet Journal of Rare Diseases, 11 (1) P 138 -

To request a copy, click here fill in form and return to library.

[Article] The development and evaluation of a holistic needs assessment within children's palliative care

An article on the Holistic Needs Assessment Tool used at East Anglia's Children's Hospices (EACH) Two years ago the hospice recognised the need for services to move away from a "one size fits all" approach to a personalised care planning approach   This article reports on the development, implementation pilot testing and evaluation of a holistic needs assessment tool. Feedback was positive from healthcare staff using the tool, leading to improved communication with families, improved documentation and the wish to embed the tool into daily practice.

Hartley, G., Berger, Z. & Maynard, L. 2016.  The development and evaluation of a holistic needs assessment within children's palliative care.  International Journal of Palliative Nursing. 22 (5) p 236 - 242

To request a copy, click here fill in form and return to library.

[Book chapter] Family resilience relative to children with severe disabilities

When a child is born who has severe disabilities identified at birth, the hopes, dreams and expectations that parents have are dramatically changed.   This chapter reviews the literature, the psychological impact and factors that facilitate resilience.  It also looks at the differing impact on fathers, siblings, and the issue of how to parent.

Harsthorne, T. Schafer, A. Stratton K. & Nacaroto, T. 2013.  Family resilience relative to children with severe disabilities.  In: Becvar, D. (Ed). Handbook of Family Resilience.  Springer.

To request the chapter, click here fill in form and return to library.

[Article] The impact of a wish: caregivers perceptions of the benefits of granted wishes for children with life-limiting illnesses

This investigation of 682 households explored the benefits of granted wishes to children who are ill, their siblings and caregivers and the benefits they provided.  Benefits included the provision of something to look forward to, stress escape and feelings of normalcy.  Results support the utility of wish making in palliative care.

Schilling, M. L. & Sarigiani, P. 2014.  The impact of a wish: caregivers perceptions of the benefits of granted wishes for children with life-limiting illnesses.  Children's Health Care, 43 p 16 - 38.

You can request this article from the library or download yourself using your Athens username and password. To request a copy from the library click here fill in form and return to the library.

To access electronically, click here log in using your Athens username and password and search via the CINAHL database.

[New book] Mindfulness for carers: how to manage the demands of caregiving while finding a place for yourself

The author provides an accessible introduction to mindfulness, and explains how simple mindfulness practices and psychological concepts can be used to manage the day-to-day demands of caring effectively, helping caregivers to gain a greater sense of control and maintain a more positive and balanced outlook.

Rezek, C. (2015), Mindfulness for carers: how to manage the demands of caregiving while finding a place for yourself, Jessica Kingsley Publishers.

Click here to request a loan from the library

[Article] "Going between worlds": travelling with children with complex needs

This study explored the experiences of 17 mothers' caring for their child with complex needs at home.  Using interviews and diaries, the research revealed that care is provided in an ongoing world of travel. Providing care when travelling is challenging, and all journeys require careful preparation and pre-emptive care.    The author concludes unnecessary travelling could be avoided by careful and co-ordinated service planning.

Nicholl, H. 2014.  "Going between worlds": travelling with children with complex needs.  Journal of Child Health Care, e-pub ahead of print November 21 2014.

To request a copy, click here, fill in form and return to library.

[Article] Being a presence: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children

Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home.  Home-based care can put family life under considerable strain.  Rainbows Trust Children's Charity aims to bridge gaps in services by providing family support workers (FSWs). This study used a range of methods to explore key aspects of the work of the FSWs with 55 families.   The study revealed how the FSWs became a presence in families' lives in 3 main ways: (1) encompassing and embracing through supporting needs and promoting resilience, (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness, and (3) accompanying and enduring by "being with families" in different settings, situations and crises.  The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is not usually provided by other services.

Carter, B., Edwards, M. & Hunt, A. 2014.  Being a presence: the ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children.  Journal of Child Health Care, e-pub ahead of print Jan 23rd 2014.

To request a copy, click here, fill in form and return to library.