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Disabled children: balancing childcare
Article

When you become parents, you’ll need to make some decisions about how to divide up work and childcare responsibilities, taking into account the level of care your child requires.

Before you make any assumptions, take some time to discuss your hopes and expectations with your partner. Many parents fall into traditional gender roles with women taking on the majority of childcare duties, even when the relationship was equal before parenthood [1].

A traditional setup may suit your family, but it may not. Have a conversation and make the decision as a couple, rather than drifting into roles you feel you’re supposed to fulfil [2]. Getting this balance right early on can help you establish a suitable routine for your child’s care and give your relationship quality a positive boost.

“Making sure I kept my professional working life going [helped us most], even though it has been a real juggling act. It has kept my sense of identity rather than being ‘only’ mum to my disabled daughter and kept me fulfilled – so I think I'm more interesting to live with!”
“[Work means] sanity. If I constantly stay in and have my life being revolved around the children and the house I think I'd go mad. [Work] brings out the creativity in my mind… I feel that I've found my niche and I'd really hate to lose it, but I've always been a carer… and I just wanted to be myself… and I am myself when I'm studying or when I'm at work”.
Sharing the care


For many parents it’s not possible to share things equally, so try to be patient and understanding with each other. If you are the main carer, remember that your partner may take longer to learn new skills. If you are not the main carer, be prepared to learn from your mistakes so that your partner isn’t left feeling like they have to do everything.

If you have access to shared parental leave, consider taking off as much time as possible together. This will give you more time to get acquainted with your child’s care needs as a couple. Making the most of these opportunities to spend shared time at home can help increase your understanding of, and confidence in, each other. This can lead to more effective co-parenting and better relationship satisfaction [1] [3] [4].

“We know that we have to get on with it – we try to respect each other, learn from each other, laugh at one another and love one another. Oh, and on the odd occasion that we get a good night’s sleep we do all the above, with value added”.
Balancing work and family when you have a disabled child


Some of the main obstacles to working include:

  • The unpredictable nature of certain conditions.
  • Difficulties getting time off for hospital appointments.
  • A lack of understanding from employers.
  • Problems finding suitable childcare.

Many parents want to work not just for the income it provides, but because working gives them the opportunity to make new friends and develop skills outside of their caring role. It can offer a space to recover from the stresses of home and family life, as it provides a change of scene from the often-frustrating demands of parenting a disabled child [5]. But others may approach it more like an obligation that takes them away from family life.

“I come home tired and then I have to face caring for our child and I have a stressed partner to deal with”.
“My partner helps a lot in the house and does the main caring plus a job. But we always worry about the future”.

As parents, it isn’t always easy to strike a satisfactory balance between work and family. If you are working and your partner is on full-time childcare duty, you might feel like you have the tougher role, feeling excluded from daytime appointments and unable to provide support to a partner who cares full time. While work can of course be stressful, try to be sensitive to the idea that your partner may be feeling a different kind of pressure from being on constant parenting duty, and may feel resentful and isolated without the change of pace between work and home [5].

“There is a great deal of resentment – I resent that he doesn’t recognise the colossal effort I put into co-ordinating schedules, visiting school and fighting continuous battles to get what our son needs”.
“Because I have to go to work they think it's a rest. They don't see that you are the one living with the child”.

One way to avoid these tensions is to recognise each other’s contributions. If you are out at work all day, you can help your partner by showing an interest in, and an understanding of, their work at home.

If there is conflict over who does what, find ways to share the work. Make sharing tasks part of everyone’s daily routine – adults and children. Make arrangements to cope with the practical aspects of your family’s daily life and troubleshoot problems in advance. This can help keep some of the pressures and stresses off your relationship.

“One parent in our relationship is the investigator, explorer, questioner, driving force, and the other keeps the home fires burning and brings perspective to ideas that can be outlandish”.
“Faith, love, grace, compassion... all these are present and manifest and we are close and love each other and feel fortunate too – but it's still a hard journey to face”.
Working and childcare


If you are both working, it can be a real struggle to balance things. Getting good quality appropriate childcare may affect the type of work you are able to do – and you may have to work extra hours to cover childcare costs or give up work to cover childcare yourself [5].

Distressingly, childcare is often a major obstacle for parents. Despite local authorities having a responsibility to ensure the provision of good quality childcare, many families caring for a disabled child still struggle to find appropriate childcare. Problems can emerge not only in paying for childcare but also in finding suitable childcare for your child.

“I would like to work, if there was affordable and available childcare to look after my children with severe autism and learning disabilities”.

You may find it helpful to talk to other families who have a disabled child to find out about their experiences of using childcare. Professionals you have been working with may also have some insight about suitable childcare providers in your area.

In certain circumstances it may be possible to get help with childcare costs via working tax credits or via Universal Credit. It may also be possible to use direct payments to arrange childcare. Through the direct payments scheme, local authorities can give cash payments rather than a service. This can enable working parents to employ someone to look after their child after school. Direct payments can even be used to pay a close relative, although only in exceptional circumstances if they share your household.

There are laws around childcare that local authorities and childcare providers must follow. If you’re struggling to find suitable childcare, or a setting has refused to take your child, you can use these and other laws to help you change the decision. You can find information and template letters to challenge childcare decisions on Contact’s website, plus a guide to help you understand your rights to childcare if you have a disabled child.

It can make things easier if you’re able to arrange to work more flexibly. Under UK employment law, you are entitled to request flexible working arrangements, and your employer is obliged to consider your request seriously [6].

“I was working full time but it was too much. My employer was and is brilliant and allowed me to change my contract to term-time only, 18.5 hours”.
“Getting a nursery place for my daughter when she was three made her transition to school much easier, as she had friends who understood her disabilities. It also helped me get back to work sooner, before I lost my confidence about being out of the job market”.
Parental leave and other help at work


Parental leave gives parents the right to take time off work to look after their children. Parental leave is normally unpaid but some employers have more generous provisions. Check your contract of employment. Both parents have the right to parental leave, so you each can take up to 18 weeks leave per child, to be used before the child's 18th birthday. Normally you have to take parental leave in blocks of one week or more, but parents of disabled children can take leave a day at a time. This means you could use parental leave for regular hospital visits.

Time off for dependents


You can also take time off work to deal with an emergency relating to a dependent, which includes your disabled child. It only covers the time taken to make alternative arrangements and any leave you take will be unpaid unless your contract of employment says otherwise.

You are allowed time off if your dependant:

  • Is ill and needs your help to provide assistance or to make arrangements for the provision of care.
  • Needs you to deal with an unexpected disruption or breakdown in care such as a childminder or nurse failing to turn up.
  • Is involved in an unexpected incident at school that you need to deal with.

You cannot take dependants leave to deal with a situation that was foreseen or planned. In these situations, you would need to take parental leave, annual leave or other any other available leave.

For more information about your rights to childcare and in work, see www.contact.org.uk/work-childcare.

“Neither my husband nor I can imagine life without the other – neither of us could cope with the children without the other's help. There is a bond between us that can never be shared by anyone else”.
References


[1] Gao, M., Du, H., Davies, P. and Cummings, M. (2018). Marital Conflict Behaviors and Parenting: Dyadic Links over Time. Family Relations DOI:10.1111/fare.12322.

[2] Jansen, M. and Liefbroer, A.C. (2006). Couples’ attitudes, childbirth and division of labour. Journal of Family Issues, 27 (1), 1487-1511.

[3] Kolak, A.M. and Volling, B.L. (2007), Parental Expressiveness as a Moderator of Coparenting and Marital Relationship Quality. Family Relationships, 56(5), 467-478.

[4] Rehel, E. (2014). When Dad Stays Home Too: paternity leave, gender, and parenting. Gender and Society, 28 (1), 110-132.

[5] Brown, T.J. & Clark, C. (2017). Employed parents of children with disabilities and work family life balance: a literature review. Child Youth Care Forum. 46: 857. https://doi-org.uos.idm.oclc.org/10.1007/s10566-017-9407-0

[6] HSBC (2012). HSBC lends a hand to back‐to‐work parents: Employees guaranteed part‐time work after maternity or paternity leave. Human Resource Management International Digest, 20 (16-17) https://doi.org/10.1108/09670731211249341

 

Issues
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For more information about the law and childcare, including template letters for childcare and funding providers, see Contact. “As Lillie-Mae’s needs increased as she got older, it was mutually agreed between the nursery management and myself that they should apply for top-up finding from the local council to provide one-to-one care services for my daughter.” “My son needs to be fed through a gastrostomy tube so when he started at nursery the staff all received the relevant training from a local community nurse. As a result, I have full confidence in their ability to provide safe and good quality childcare for him.”  “I managed to find a local nursery that was wheelchair accessible and offered one-to-one care, 35 hours a week at no additional cost. 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Caregiver, child, family, and service system contributors to caregiver strain in two mental health service systems. The Journal of Behavioral Health Services and Research, 33, 408 – 422. [6] Seltzer, M. M., & Heller, T. (1997). Families and caregiving across the life course: Research advances on the influence of context. Family Relations, 46, 395– 405. [7] Sanders, M. (1999). Triple P-Positive Parenting Program: Towards an Empirically Validated Multilevel Parenting and Family Support Strategy for the Prevention of Behavior and Emotional Problems in Children. Clinical Child and Family Psychology Review, Vol.2(2), 71-9. [8] Ludlow, A., Skelly, C., Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, Vol.17(5), pp.702-71.
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User article | shared parenting, co-parenting, childcare
“Concerned stepmother”
My husband has decided to uproot his two severely autistic teenage boys from their school so that he can attend university in a city nearly 300 miles away only to try and return them to the school they left in a year's time as the research part of his degree will be conducted in the city he currently lives in. He has been also been offered a university place at a Russell Group university on his doorstep to do exactly the same degree but has chosen the one 300 miles away because it’s more prestigious. My concern is I feel that it is unfair on the children to uproot them especially as they have severe autism and familiarity and routine is important for them. To move a child without Autism from what they know and is familiar to them is bad enough yet alone children with Autism. One of the children in particular does not manage change well and he becomes violent if distressed. I want to support my husband in his studies but feel that he should choose the option that causes the least disruption especially for the children. He thinks that I’m being unsupportive if I don’t agree with his decision and makes reference to his female friends as being supportive almost as if you have a dig. I feel that he is being selfish in his decision but then I question whether I’m being selfish for not supporting him in his decision. We are in a long distance marriage of 100 miles between us which means that I will be left to do all the travelling if he moves city as the support network which was around the children at home, freeing my husband to occasionally visit me, will no longer be there. Tbh, my concern around his decision centres more around the children as I can adjust easier than his children. I am not looking for responses to make me feel better I am looking for objective responses please. How would do approach this situation and what advice if any should I be giving my husband? Thank you for your time,A concerned stepmother
User article | parenting, long distance, disability
Disabled children and bullying
Article | disability, bullying
Being parents to disabled children: part 2
In part one of “The positives of being a parent to a disabled child” we found that, despite facing greater challenges, parents with a disabled child often reported that their child’s disability had a positive effect on their lives.  “Indeed, irrespective of the child’s impairment type (eg ASD, cerebral palsy), approximately two out of three parents in this study agreed that, overall, having a disabled child has been positive for their family.” We drew from a study of 175 parents and started looking at what they meant by ‘positive’. Here’s what else parents had to say: “I’ve become a stronger and more compassionate person”  When care and attention is highly demanding, sometimes people find out what they’re really made of, and what their relationship is made of too. Demanding times often reveal the point where your resolve begins to wear thin, or where you start to buckle. As a parent in this situation, the love for your child and your commitment to caring for them could strengthen that resolve in a way that surpasses your own expectations. Just as athletes can tap into a hidden pool of strength in the final lap of a 10,000-metre run, parents also find energy, patience and, endurance they didn’t know they had. As a parent, you face the added mental challenge of knowing you cannot quit or duck out but, much like that athlete, it’s your team of family, friends, and support networks that enables you to keep going.  "As a result of having a child with a disability, our family unit has emerged stronger" This extra energy to keep going can show parents how much they’re willing to give of themselves, which may surprise them. Especially those that perhaps considered themselves to be less caring or compassionate in nature.  “I’ve been able to laugh more, and I’m less bothered by trivial things” Parents facing additional challenges can sometimes gain a focus and a perspective that others do not seem to share. And that perspective – what matters and what doesn’t – can become something that sets those parents free from the humdrum of daily life. This perspective isn’t easily taught either. As people who get bent out of shape over trivial things will tell you, to them they’re not trivial issues – they’re deadly serious ones. Perspective is also coupled with resilience. Having bounced back from a series of challenges, you’re more likely to know what is worth your energy and what isn’t. Without realising it, you’ve probably become very good at estimating the value of your energy, your effort and your time. This might explain why parents with disabled children can sometimes enjoy life more, and laugh at the silly things, rather than be upset by them. Now that you’ve seen what other parents have to say about their experiences and how it’s shaped them, we’d love to hear your story. Have you, your relationship, or your family been changed for the better through your experience? Either leave us a comment, or get in touch with Contact. References [1] David McConnell, Amber Savage, Dick Sobsey & Bruce Uditsky (2015) Benefit-finding or finding benefits? The positive impact of having a disabled child, Disability & Society, 30(1), pp.29-45.
Article | parenting together, disability
Disabled children and interfering in-laws
When you’re the parent of a disabled child, there’s a lot of information to absorb. Some of this can be useful but, like all parents, you may also find yourselves on the receiving end of unsolicited tips, advice, and wisdom. When it comes from your in-laws, it can be hard to know where to draw the line. In-laws can be a be a valuable source of emotional, financial, and practical support [1]. Depending on where they live, they can be a useful source of childcare, and play a valuable part in helping your children develop new skills [2]. Many can represent a calming influence during new and stressful situations that they already know their way around. As a parent of a disabled child, the issue becomes more complex. There are medical, social, and educational factors to consider that your and your partner’s parents may never have had to deal with before. Even if their parenting expertise hasn’t gone out of date, it may not be relevant to your child’s specific needs. However difficult your in-laws might be, it’s worth remembering that they have raised children too – they even raised someone that you fell in love with! But that doesn’t mean they’re always right. If their attempts to offer support just lead to arguments, the support itself may not be worth the emotional price you pay for it [3]. As the parent, it’s up to you to accept or reject offers of support. While your in-laws may have some useful nuggets, you and your partner are the ones who have access to the full picture as to what’s best for your child. Annoying in-laws If your in-laws are constantly texting bits of unhelpful advice, or if they come to the house and criticise a routine that you’ve been working hard to establish with the support of your child’s care team, then you need to find a way to respond. While the most obvious and possibly most satisfying response is to tackle them directly, this could lead to unnecessary arguments. Even when you know you are right, you still run the risk of turning your in-laws against you and upsetting your partner. The most effective way to deal with interfering in-laws is to talk to your partner first [4]. Speak openly to your partner about how you feel and why you’re concerned. As with any difficult conversation, start by talking about your own feelings, stick to the issue at hand, and give your partner a chance to digest what you’ve said. Don’t criticise or attack your in-laws – your partner has had to deal with them a lot longer than you have, and you don’t want to provoke a defensive reaction! Differences of opinion When you become parents, your priorities shift and your relationships change. This can include a rise in conflict with your in-laws. If you get on very well with them, this might just mean a few tiffs but, if you’re already prone to rowing, things could turn very stormy [5]. This makes sense as there’s more at stake than before – the little things you used to be able to ignore now need to be addressed head-on. Like you, your parents-in-law want the best for your child. Unlike you, they’re not around every day to make fully informed decisions about what’s actually best. If they start getting more involved than you want them to, it can feel intrusive and controlling. This can lead to problems between you and your partner, as you battle to strike the right balance [5]. Creating an effective boundary can be difficult. You and your partner will have to decide what’s acceptable and what’s not. You might want to agree a strategy in advance – for example, any time your parents or in-laws offer tips, thank them, and let them know you’ll consider their advice. You and your partner can then discuss the advice in private and make an appropriate decision. Sharing information It can be very helpful to update your in-laws on any information you learn about your disabled child. This could include medical information, or any strategies you’ve learned from your paediatrician, speech and language therapist, or other trusted provider like a charity or the NHS. If you have this information written down or printed out, show it to them, or ask your partner to. Discuss the information to help them understand what you’re trying to achieve with your child. It may also help them understand that you and your partner are in touch with the authoritative experts so they do not need to worry constantly that you may be doing the wrong thing! Getting to know your in-laws better Being on good terms with your in-laws can have unexpected positive side effects. One study found that couples who have closer ties to their in-laws tend to be happier and more satisfied with their own relationships [6]. So, rather than shutting them out, ask yourself it it’s possible to get to know your in-laws a little better. Take the opportunity to learn more about your partner’s background; encourage your in-laws to talk about the family history and customs. These conversations can help you form a bond, and may even have a positive impact on your relationship with your partner [7]. If you continue to struggle with your in-laws, take some comfort from the possibility that things can improve over time. Even the most vocal in-laws are capable of changing and coming around to accept your way of doing things. References [1] Goetting, A. (1990). Patterns of Support Among In-Laws in the United States A Review of Research. Journal of Family Issues, 11(1), 67–90. [2] Enyart, S. (2012). The transition to extended family: Examining the links between turbulence and children-in-laws’ goals, topic avoidance, and relational outcomes. University of Illinois at Urbana-Champaign. [3] Schober, P. S. (2013). Gender Equality and Outsourcing of Domestic Work, Childbearing, and Relationship Stability Among British Couples. Journal of Family Issues, 34(1), 25–52. [4] Rittenour, E. C., and Kellas, K. J. (2015). Making Sense of Hurtful Mother-in-law Messages: Applying Attribution Theory to the In-Law Triad. Communication Quarterly, 63(1), 62–68. [5] Bryant, C.M., Conger., R.D., and Meehan., J.M. (2001). The Influence of In-Laws on Change in Marital Success. Journal of Marriage and Family, 63(3), 614-626. [6] [Timmer, S.G., and Veroff, J. (2000). Family Ties and the Discontinuity of Divorce in Black and White Newlywed Couples. Journal of Marriage and Family, 62(2), 349-361.   [7] Serewicz, M.C.M., Hosmer, R., Ballard, R.L., and Griffin, R. A. (2008). Disclosure from In-laws and the Quality of In-law and Marital Relationships. Communication Quarterly, 56(4), 427–444.
Article | grandparents, parenting, disability
Considering having another child
For any parents, having another child is a big decision that requires serious consideration. So, if you are thinking about having another child, it’s likely your discussion will be affected by the financial, social, and health factors already in play in your lives. As parents of disabled children, you may be feeling this even more strongly. Studies have shown that parents raising children with disabilities are more likely to experience mental health issues such as anxiety, stress, and depression, (Stoneman, 2007) as well as relationship difficulties and problems at work (Simsek et al., 2015). One study asked parents of disabled children their thoughts around having another child. The main concerns included: Having less time to care for existing children Not having enough money to care for another child Risk of health problems in the next child (Simsek et al., 2015) Siblings You may also be concerned about what kind of life another child would have as the sibling of someone who requires regular extra care. You might be worried that your next child would have a stressful life, or that you wouldn’t be able to dedicate as much time to them as you would like to. This is certainly worth considering - some studies have shown that siblings of disabled children can experience increased stress in their lives (Murray, 2000) (Javadian, 2011). However, there is also evidence of siblings feeling a positive benefit of living with a disabled sibling. Children who are involved in the care of disabled siblings can grow up learning to be more helpful and compassionate than other children, and may also develop greater emotional awareness (Javadian, 2011) (Fisman et al., 1996). How will having another child affect your relationship? While parents of disabled children are statistically more likely to separate (Gardener and Harmon, 2002) (Patterson, 2002), many couples have a much more positive experience, and find that their relationship is strengthened and their bond solidified. Parents of children with additional needs have to rely on each other for support, and this can benefit your couple relationship, bringing you closer together (Simsek et al., 2015). It’s likely that you’ll have a lot to think about as you make a decision around whether or not to try for another child. However, depending on your experiences, you may feel more confident knowing that you’ve made it this far, learning and growing together. Whatever other factors you need to consider, the fact that you are thinking about it at all could be a positive sign about the strength of your relationship as a couple, and your capacity as parents. References Cahill, B. M., & Glidden, L. M. (1996). Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American journal of mental retardation: AJMR, 101(2), 149-160. Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child & Adolescent Psychiatry, 35(11), 1532-1541. Gardner, J., & Harmon, T. (2002). Exploring resilience from a parent’s perspective: A qualitative study of six resilient mothers of children with an intellectual disability. Australian Social Work, 55(1), 60-68. Javadian, R. (2011). A comparative study of adaptability and cohesion in families with and without a disabled child. Procedia-Social and Behavioral Sciences, 30, 2625-2630. Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal of advanced nursing, 34(5), 582-592. Marsh, J. C. (2003). Editorial: Arguments for Family Strengths Research. Social Work, 48(2), 147-149. Murray, J. S. (2000). Attachment theory and adjustment difficulties in siblings of children with cancer. Issues in Mental Health Nursing, 21(2), 149-169. Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of marriage and family, 64(2), 349-360. Şimşek, T. T., Taşçı, M., & Karabulut, D. (2015). Desire to have other children in families with a chronically disabled child and its effect on the relationship of the parents. Turkish Archives of Pediatrics/Türk Pediatri Arşivi, 50(3), 163. Stoneman, Z., & Gavidia-Payne, S. (2006). Marital adjustment in families of young children with disabilities: Associations with daily hassles and problem-focused coping. American Journal on Mental Retardation, 111(1), 1-14.
Article | parenting, disability, children
Planning a stepfamily
Article | stepfamily, parenting, disability
Children in hospital
When your child has a disability or long-term illness, hospital stays might be a familiar part of your life. But hospitals can be stressful places, and managing a stay can be tough for you as parents [1], both practically and emotionally.You may worry about leaving your child in the care of hospital staff, particularly if your child has communication difficulties and important decisions are being made [2]. Younger people with learning disabilities can often find it difficult being understood in hospital settings [3]. Dealing with hospital staff If you’re having difficulty accessing the support and services your child needs, it can have a significant impact on you and your partner [4]. It can sometimes feel like hospital staff don’t know how to offer the care your child needs [5] and you may find yourself going over the same things as you are passed from one practitioner to the next. One way to ensure your child’s needs are properly considered is by using a hospital or communication passport for your child.A hospital passport is a booklet that you can use to pass on crucial information about a child or young person with additional needs. It contains information about their condition, medications, likes and dislikes, and essential information if an emergency happens. This can ensure that all the professionals who come into contact with you and your child have the same information without you having to keep explaining things. This can be particularly useful for children with a learning difficulty. Mencap have a hospital passport for children with a learning disability on their website: www.mencap.org.uk/advice-and-support/health/our-health-guides.Even the most well equipped hospitals cannot provide the round-the-clock care that many severely disabled children need, so children might be completely dependent on others to stay comfortable and happy in hospital. As their mum or dad, you may need to be by their side for much of the day to pick up the extra care that nursing and clinical staff can’t offer. This can include practical things, but also just talking to them, and keeping them reassured and entertained.You may need to ask hospital staff to have patience with you. Having a child in hospital can be draining for parents [4] and you may not be at your best when trying to communicate important things to the staff. When you feel that hospital staff aren’t very understanding about your experiences, it can leave you feeling unsupported, and worried about the decisions that are being made while you’re not there [5].At times like these, you and your partner might need to make a special effort to support each other. It can be helpful to spend five or ten minutes at the end of the day, talking about what you’ve found difficult and what has gone well. This can help give you a better understanding of each other’s experiences, while getting emotional support from the person who is going through this with you. It can also give you a chance to gather your thoughts and reflect on the day. Support while your child is in hospital Having a child in hospital can sometimes open the door to services and support you may not have accessed before. Make sure you enquire about specialist support. Some charities work in hospitals providing condition-specific nurses, such as Roald Dahl nurses who can visit and support you, and provide follow up care when you’ve left the hospital setting.There are also charities who take applications for financial support, like grants to families with a child in hospital. See https://contact.org.uk/help-for-families/information-advice-services/money-debt/grants-loans-welfare-schemes/ for a list of grant-giving charities, or contact the helpline for a copy on 0808 808 3555 or helpline@contact.org.uk.The hospital’s Patient Advice and Liaison Service (PALS) can offer parents confidential advice, support and information. They can help you with health-related questions and help resolve concerns or problems when you're using the NHS. You can usually find their office in or near the main entrance of the hospital.Contact has parent advisers based at six children's hospitals across the UK, providing families with emotional and practical support. Parents can drop by the information stands or ask someone to come to the ward. Contact currently work at: Birmingham Children's Hospital. Royal Manchester Children's Hospital. Alder Hey Children's Hospital. Great North Children's Hospital. The Evelina Children's Hospital. Great Ormond Street Hospital. Leaning on friends and family If you are stressed, it can have an impact your child’s health and behaviour [1], so it’s important to make sure that you and your partner are well supported. One of the best ways to cope with stress is to lean on your friends and family [1] [6].Sometimes talking to someone outside of the situation can help you let off steam in a way that talking to your partner can’t. You may also be able to ask for practical help, like lifts to or from the hospital, picking up other children from school, or helping you out with the housework for a while. It can be hard to ask for help, but try to be kind to yourself and remember that lots of people enjoy feeling needed and will be happy to support you when they know what you’re going through. Staying with your child If your child is having a long stay in hospital, you can help them by keeping things as normal as possible, like making sure they have access to schoolwork and home comforts [1].If your other life commitments allow it, you may be able to stay in or near the hospital with your child. Most hospitals allow or even encourage this and some have funded schemes to offer low-cost accommodation nearby [7]. There are also centres like Ronald McDonald House which have been set up specifically to allow your family to stay together while your child is in hospital. Staying close to your child can take some of the worry out of the situation [7] and help you feel more confident about the care your child is receiving [2]. It may also put you in touch with other parents who are in similar situations [7]. Looking after your relationship However you decide to manage things, you and your partner will probably have to make some compromises. Set aside some time to work things through as a couple – make a list of what needs doing and work out where it’s possible to free up time and resources to make things work.You may be able to divide things up equally, or one of you may have to do the majority of the heavy lifting while the other keeps working. Agree a strategy that works for both of you and make a plan to review it and check if it’s working. Talking things through can help you see how each other is involved, and give you both a greater sense of fairness. Coming home Before your child comes home, make sure you contact the hospital social work department to arrange your child’s care needs when they are discharged. The hospital should liaise with your local authority to make sure you and your child have everything in place. If your child’s care needs have changed, be prepared to start a new routine rather than trying to recapture the old one. No one can pretend that having a child in hospital is anything but a stressful experience, and it’s normal for feelings of stress and worry to continue even after your child is discharged [8], so give yourselves a chance to adjust afterwards.  References [1] Commodari, E. (2010). Children staying in hospital: a research on psychological stress of caregivers. Italian Journal of Pediatrics, 36, 40. http://www.ijponline.net/content/36/1/40  [2] Gumm R, Thomas E, Lloyd C, et al. (2017) Improving communication between staff and disabled children in hospital wards: testing the feasibility of a training intervention developed through intervention mapping. BMJ Paediatrics Open 2017;1:e000103. doi:10.1136/bmjpo-2017-000103 [3] Care Quality Commission (2017) NHS Patient Survey Programme.Children and young people’s inpatient and day case survey 2016: Statistical release. http://www.cqc.org.uk/sites/default/files/20171128_cyp16_statisticalrelease.pdf [4] Care Quality Commission (2012) Health care for disabled children and young people. A review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England. https://www.cqc.org.uk/sites/default/files/documents/health_care_for_disabled_children.pdf [5] Hagvall, M., Ehnfors, M. and Anderzn-Carlsson, A. (2016) Experiences of parenting a child with medical complexity in need of acute hospital care. Journal of Child Health Care, 20(1), pp.68-76. DOI: 10.1177/1367493514551308 [6] Kersh, J., Hedvat, T.T., Hauser-Cram, P. and Warfield, M. E. (2006), The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50: 883–893. doi:10.1111/j.1365-2788.2006.00906.x [7] Franck, L.S., Ferguson, D., Fryda, S., & Rudin, N. (2015). The child and family hospital experience: Is it influenced by family accommodation? Medical Care Research and Review, 72(4), 419-437. [8] Wray, J., Lee, K., Dearmun, N. and Franck, L. (2011) Parental anxiety and stress during children’s hospitalisation: The StayClose study. Journal of Child Health Care, 15(3), pp.163-174. DOI: 10.1177/1367493511408632
Article | parenting, disability
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