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The effects of the birth of a child with a brain-related condition on the parent's relationship  

Background

The birth of a baby has a major impact on a family and whilst it is nearly always a positive and happy event, it does have the potential to be stressful as it involves substantial changes in the daily routine. 1 However, a significant number of new parents not only have to cope with these general changes but also have to deal with additional challenges because their child is born with a brain-related condition. In the UK there are 770,000 children under the age of 16 with a disability, 98% of whom live at home and are supported by their families. 2

Within the literature on parents of children with brain-related conditions there exists an assumption that due to their circumstances, they are more likely to experience marital discord and divorce. 3,4 The care that a disabled child requires can be much greater than that of a normally developing child and therefore, places extra care demands on the parents. This in turn can lead to high stress levels which have the potential to cause conflict within a marriage and may explain why a large number of children with special needs may live in a one parent household. 5, 6, 7

The evidence to date suggests that it is when parents of a disabled child perceive that they cannot cope, that the resultant stress has a detrimental effect on their relationship. If parents receive emotional and practical help from their spouse they are likely to experience less stress 8 and are therefore better able to enjoy a good relationship with their partner.

Knowledge of coping strategies have been reviewed and acknowledged by professionals and parents alike, and this knowledge has the potential to improve parents’ day-to-day life when caring for a disabled child. However, due to the nature of human difference, some strategies may be of more value to certain individuals, and they may report that these have enabled them to cope. This article will briefly review the literature on coping strategies and mechanisms. Attention will then focus on more recent literature that discusses the notion of positive perceptions and the impact that a change of view can have on parents, as well as the clinical potential of the use of a Positive Contributions Scale (PCS) as a facilitator to promote positive coping strategies.

Supporting each other: nurture your marriage

Researchers 15 have identified that in a marital or cohabiting relationship a partner is likely to be the most intimate person in an individual’s life and that often knowing each other thoroughly is seen as a support. Mothers of disabled children involved in the study reported that they viewed their partner as a source of emotional support and strength. It has also been evidenced 16 that a supportive marital relationship can have an impact on the care of the child. It is suggested that if a spouse offers emotional and practical support in the care of the child, this has the potential to affect their partner’s perception of their disabled child. For example if a spouse takes an active role in the child’s life, then the child’s care will be shared and therefore, the stress will not be placed on only one parent, and therefore it is more likely that those parents adapt a positive perception of their child. If the spouse discusses the child in a positive manner then this may lead to better acceptance and in turn this could be better care for the child.

However a supportive marital relationship at a time where parents are experiencing increased stress levels, as well as the emotional reactions that parents may experience may be a goal that seems hard to achieve. It is therefore discussed in the literature that parents feel they must make a conscious effort to nurture their marriage. A Canadian study 14 identified this need; one mother interviewed stated "we go out of our way to make our relationship a good relationship". An earlier paper by the same authors on parents of children with Down’s Syndrome identified that safeguarding their marriage was an effective life management strategy that many parents employed. It has been identified 17 that this is achieved by spending time together as a couple, being able to communicate openly and "creating mutual ownership of family problems and solutions".

At a time of crisis it seems that every person will cope in their own way, however, when the crisis is the birth of a disabled child, parents may be consumed with their own emotions, and may feel unable to discuss the way they are feeling with their partner. The aforementioned studies however, highlight that parents need to use their relationship as a safe haven in times of crisis, and that even though they maybe feeling consumed with their emotions, they must acknowledge that they are not in the situation alone and they are able to look to each other for support and comfort.

The role of information about support services and the child’s condition

Researchers who are also mothers of disabled children advise other parents that "rather than be paralysed by unpredictability, get the information you need to enhance your sense of control." 3 They suggest that taking some control back by gathering information on their child’s condition and support services available, can help parents to handle the stress created by the unpredictability of their situation. This information can come from professionals (doctors, social workers, health care workers, teachers etc.). Parents have also reported that they get a lot of information from attending support groups. Researchers found that the parents they questioned described support groups as providing a "forum in which parents can discuss their concerns and exchange ideas with each other." 9 Support groups also allow parents to campaign and change things, as well as gain new perspective. Researchers 10 found in a review of the literature on family stress and coping that mutual help groups, not only support their members but are also focused on action and changing policies and attitudes that affect what they discuss as a problem situation.

The role of information to family members

Researchers and parents alike have stressed the importance of family support; a father of a disabled son 11 stated that for him: "Under most circumstances, the family is the best support system known to man". However, some older grandparents grew up in an era where disabilities were not seen as much as they are in present society and sometimes, this lack of knowledge can act as a barrier to support. 3 A way of counteracting this and allowing grandparents to feel included is if parents share any information that they receive from professionals on their child’s condition, for example, leaflets and booklets. This may encourage grandparents to play active parts in their grandchild’s life if they feel empowered and capable of caring. This in turn will help parents, as they are more likely to receive practical support from them if they feel confident in the child’s care. This information can also be shared with other family members (aunties, uncles, brothers and sisters) as the more they learn about the child’s condition, the better prepared they may be to cope with it. Also if the child has older brothers and sisters, explaining things to them can give them ownership of their sibling’s condition, and allow them to create a strong bond with them. Researchers have found that parents’ ability to cope depends to a large extent on the support and help they receive from extended family members. 12

The benefits of supportive friendships

Some researchers 13 have found that social supports are valuable to parents of children with disabilities as they "enable parents to maintain their sense of normalcy, and give them strength when their personal coping ability ebbs" (p.52). Spending time engaged in fun activities with friends who do not have children with disabilities enables parents to maintain their sense of their own identity, and to forget about their troubles for a short period of time. The activities that were discussed were exercise, reading, gardening and shopping, even though these may not have consumed long periods of time, an hour out meant that parents were psychologically and emotionally refreshed when they allowed themselves time to relax. Researchers 3 have found that it helps parents when they do not limit their social circles to only parents in the same position as themselves as "Disability is only one component of life" (p.185).

Identification of a parents need for respite: time for themselves

It has been identified 14 that parents who have take advantage of respite care offered by social services and other professional bodies, have more energy and creativity to bring up their child and care for their needs. Acknowledging that parents may benefit from having some time for themselves is an important consideration in the ability of an individual to cope, time away from the child may offer a release that acts as a buoyancy aid when the parents feel that the task of caring is becoming too much. Although this seems a simplistic strategy, within the literature it has been discussed by parents of disabled children as one which has proved very resourceful, and as coping is a very individual process, the needs expressed should be considered by professionals and support agencies. Many parents feel that they are lost in a ‘disabled world’ where everything revolves around their child, however keeping their own identities by allowing themselves time to do the things that they enjoy will allow parents to regroup their emotions, recharge their batteries and allow them to carry out their caring roles with a better outlook.

The impact of positive reappraisal

Recent literature on the topic of coping strategies used by parents of a child with a brain-related condition has introduced the notion of positive perceptions and reappraisal of the situation, forming the argument that adapting a positive outlook can affect the way in which parents cope and form attachments to their child.

A review of the parental positive perceptions literature, 18 highlighted that negative attitudes from family members, friends, relatives and society do not only ‘impact the child directly, but also add on to the existing stress levels of the family’. The authors suggest that helping families develop a positive outlook may be an important part of clinical intervention. It is recommended that therapists should educate parents to concentrate on positive outlooks, as a way of facilitating families’ coping strategies, and it is suggested that this could be achieved through marital and family therapy or individual counselling.

Researchers 19 have investigated the concept that a change in parent’s perceptions can facilitate effective coping further by reviewing the positive contributions made by children with a brain-related condition in the family unit. They suggested that a change in parents’ outlooks, such as acknowledging that the child does possess the ability to contribute to the family in many different ways, may allow them to change their perspectives. This produced an argument for the use of the Positive Contributions Scale (PCS) of the Kansas Inventory of Parental Perceptions 20 in applied settings, for example, when parents have consultations with doctors and other professionals.

The Kansas Inventory of Parental Perceptions (KIPPS) was designed to measure four aspects of perceptions among parents who have children or adult sons and daughters with disabilities. One aspect was Positive Contributions, defined as how the family perceives the family member with a brain-related condition, as a source of positive contributions to the family unit. The second was Social Comparisons, identified as comparisons to other  families with and without a child with a brain-related condition. Causal Attributions was the third aspect, investigating what parents believe caused their child’s disability (including medical reasons, and fate/God’s will) .Finally Mastery/Control is described as how parents perceive that they can influence their child’s life, for example, how much control they have of the situation. KIPPS has the ability to report the positive implications of having a child with a disability, because parents are asked to report the positive effect of their child on their lives.

A Parental Perceptions Scale like KIPPS can be seen as a radical change in the way in which parents of a child with a brain-related condition perceive their experiences. If professionals, rather than dwelling on negative aspects, such as the limitations of the child’s condition for example make light of the positive then parents may begin to view their situation differently. This change has the potential to create a better social identity for these parents that could lead to inclusion and understanding.

However, concentrating on all the positive aspects has been criticized21 It is discussed that solely concentrating on positives could result in consequences that are unhelpful for the family’s emotional development. It is suggested that a consequence could be that professionals dealing with families may ignore the reality that some families, even when they have access to a variety of resources, will experience a period of increased stress in their lifespan whilst trying to raise a child with a disability.

Although the impact of changing parents’ perspectives runs the risk of disregarding parents’ emotions, having harmful consequences when the reality of the situation parents find themselves in is apparent. It has been argued 19 that a tool such as the Positive Contributions Scale (PCS) may help to ‘soften the impact’ (pp.163). This emerges as many of the assessments carried out on families focus more on the problems and deficits of the child. Earlier work 22 highlighted that many practitioners only get involved with a family when the family is struggling to cope, which leads to those practitioners having preconceived ideas: assuming that ‘the birth of a disabled infant can only be anticipated to have serious negative effects on the family that need to be ameliorated’. It is stated that use of the PCS ‘may serve as a reminder that raising a child with disabilities can be challenging, but also has its positive side.’

The use of questionnaires as tools that highlight the positives of raising a child with a brain-related condition is a far cry from more dated papers which concentrate solely on the negative impacts of parenting a child with a disability. The contrast can be drawn when more dated literature is considered. Some 23 discuss how the reaction of individuals outside the family can impact the presentation of children by parents. It is discussed that if the general public are discriminatory towards the disabled child, for example staring and making comments when the child is behaving badly, then parents are embarrassed and will try to conceal their child’s condition, assuming that the general population see it as abnormal. Thirteen families were interviewed and a negative paper was produced, solely concerned with the way in which parents manage their children’s ‘public appearances’, highlighting that the families they interviewed felt that their competence as a parent would be judged on the behaviour that their child exhibits, causing great stress and feelings of exclusion.

This theory however is not one that had faded over time as disabilities in society become more accepted and exposed, as it is echoed in more recent literature. The attitude of the general public when confronted with a child who displays challenging behaviour has been assessed. 24 However the difference in this paper is that it is recognised that parenting a child with a challenging behaviour is a highly complex task. It is acknowledged that in the eyes of the general public, that parents of children who display challenging and socially inappropriate behaviours are expected to remain calm and cope in situations where the child is exhibiting them. However, in instances when the parent fails to do this they are tarred with the assumption that they are doing a poor job or failing as a parent.

It appears that negative societal perceptions have the ability to cause great stress to a parent. However, it must be considered that if a parent is coached on the ability to cope in certain situations and adapt their way of thinking, for example not becoming embarrassed or offering information to those individuals who will stare at their child, then they will feel less stressed. It could, therefore, be the case that if a parent adapts the way in which they perceive their child, they will be better equipped to deal with the way in which society views their child.

Factors which lead to positive perceptions of mothers of children with a brain-related condition have also been investigated. 25 They distributed surveys to 41 mothers which addressed demographics, care demand, family support, family coping and positive perceptions, and allowing for analysis of perceptions. Their investigation and the subsequent data produced a support for the hypothesis that positive perceptions may function as a mechanism for coping with the stresses and strains of caring for a child with intellectual disabilities. The authors do however demonstrate the limitations in their study, discussing a low response rate, of only mothers so there was a possibility for response bias, as if those mothers who participated had a positive outlook, then they are more likely to report positive perceptions. However, their work draws attention to the possible association between coping and positive perceptions in parents, identifying that further research is needed in this field. If positive perceptions can lead to better coping then it could be suggested that clinicians should be made aware of this link so that they can offer support to parents to enable them to achieve a more positive outlook. Literature on the topic, written by parents, identifies that there is a need to remember the positives as it is easier to become consumed with the negatives. Although the concept of positive perceptions is flawed due to the delicate nature of changing parents’ perceptions, it is one which has received much recent attention and may be an avenue to consider as an effective coping strategy.

A conclusion that can be drawn from the literature is that the way in which an individual copes can affect the way that they perceive their life, the support they receive and their relationship with their spouse/partner. The coping mechanisms used by parents may differ but many produce the same outcome; that effective coping leads to effective life management.

Useful Organisations

Marriage Care 
A charity working in England and Wales providing support, education and help with relationship problems.
Tel: 0207 371 4921 Website: www.marriagecare.org.uk

The Couple Connection
This is a self-help website to help couples solve their own problems.
Website: www.thecoupleconnection.net

The Parent Connection
A UK website that supports parents through separation and co-parenting problems, as well as couples concerned about their relationship.
Website: www.theparentconnection.org.uk

Relate
Provide support and advice concerning family relationships. Relate has been given extra funding from the Department for Education to help support families with a disabled child.
Helpline: 0300 100 1234  Website: www.relate.org.uk and www.relateforparents.org.uk

Single Parents

Dads UK
A forum site for single fathers.
Website: www.dads-uk.co.uk

Gingerbread
A national charity that works for and with single-parent families to improve their lives. They provide information on a range of issues such as child maintenance, contact, employment, education, welfare benefits and tax credits, housing, debt, as well as direct support services.
Free phone: 0808 802 0925  Website: www.gingerbread.org.uk

Disclaimer: Cerebra is not responsible for the content of external websites and any referral does not necessarily indicate Cerebra’s endorsement of the website content.

References

1 Edworthy, A. (2005). Managing stress for carers. Carmarthen: Cerebra

2 Contact a Family. (2010). Statistics: Information about families with disabled children [online]. Available from: http://www.cafamily.org.uk/professionals/research/statistics.html. [Accessed 7 May 2010]

3 Marshak, L.E. & Prezant, F.P. (2007) Married with Special-Needs Children: A couples’ guide to keeping connected. USA: Woodbine House

4 Sobey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: Chicken or egg?. Developmental Disabilities Bulletin, 32, pp 62-83

5 Lyon, N., Barnes, M. & Sweiry, D. (2006). Families with children in Britain: Findings from 2004 Families and Children study (FACs) [online]. DWP Research Report, London: Department for work and pensions. Available from: http://research.dwp.gov.uk/asd/asd5/rports2005-2006/rrep340.pdf [Accessed 14/01/10]

6 Featherstone, H. (1990). A Difference in the Family: Living with a Disabled Child. USA: Penguin

7 Toro, P.A., Weissberg,R.P.,Guare,J. & Liebenstein,N.L. (1990). A Comparison of Children with and without Learning Disabilities on Social Problem-Solving skill, School Behavior, and Family Background. Journal of Learning Disabilities, 23, 115-120

8 Contact a Family. (2003). No Time For Us: Relationships between Parents who have a Disabled Child. [online]. Available from: www.cafamily.org.uk/pdfs/no_time_for_us_report.pdf. [Accessed 14 January 2010]

9 Yau, M.K. & Li-Tsang, C.W.P. (1999). Adjustment and Adaption in Parents of children with developmental disability in Two-Parent families: A Review of the Characteristics and Attributes. The British Journal of Developmental Disabilities, 45, 38-51

10 McCubbin, H.I., Joy, C.B., Cauble, A.E., Comeau, J.K., Patterson, J.M. & Needle, R.H. (1980). Family Stress and Coping: A Decade Review. Journal of Marriage and Family, 42, 855-871

11 Callanan, C.R. (1990). Since Owen: A Parent-to-Parent Guide for Care of the Disabled Child. USA: The John Hopkins University Press

12 Hornby, G. & Ashworth, T. (1994). Grandparents’ support for families who have children with disabilities. Journal of Child and Family Studies, 3, 403-412

13 Schilling, R.F.,Gilchrist, L.D. & Schinke, S.P. (1984). Coping and Social Support in Families of Developmentally Disabled Children. Family Relations, 33, 47-54

14 Scorgie, K. & Wilgosh, L. (2008). Reflections on an Uncommon Journey: A Follow-up Study of Life Management of six mothers of children with diverse disabilities. International Journal of Special Education, 23, 103-114

15 Beresford. B. (1994). Positively Parents: caring for a severely disabled child. HMSO

16 Yau, M.K. & Li-Tsang, C.W.P. (1999). Adjustment and Adaption in Parents of children with developmental disability in Two-Parent families: A Review of the Characteristics and Attributes. The British Journal of Developmental Disabilities, 45, 38-51

17 Scorgie, K., Wilgosh, L., Sobsey, D. & McDonald, J. (2001). Parent Life Management and transformational outcomes when a child has Down Syndrome. International Journal of Special Education, 16, 56-68

18 Gupta, A. & Singhal, N. (2004). Positive Perceptions in Parents of Children with Disabilities. Asia Pacific Disability Rehabilitation Journal, 15, 22-35

19 Hastings, R.P., Beck, A. & Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family: Mothers’ and fathers’ perceptions. Journal of Intellectual Disabilities, 9, 155-165

20 Behr, S.K., Murphy,D.L. & Summers, J.A. (1992). User’s Manual: Kansas Inventory of Parental Perceptions. [Online]. Kansas: The University of Kansas and Beach Center on Disability. Available from: http://www.beachcenter.org/books/FullPublications/PDF/KIPP.pdf [Accessed 11 March 2010]

21 Hastings, R.P. & Taunt, H.M. (2002). Positive Perceptions in Families of Children with Developmental Disabilities. American Journal on Mental Retardation, 107, 116-127

22 Trute, B. & Haunch, C. (1988). Building on Family Strength: A Study of families with positive adjustment to the birth of a developmentally disabled child. Journal of Marital and Family Therapy, 14, 185-193

23 Voysey, M. (1972). Impression Management by Parents with Disabled Children. Journal of Health and Social Behavior, 13, 80-89

24 Abidin, R.R. (1990). Introduction to the Special Issue: The Stresses of Parenting. Journal of Clinical Child and Adolescent Psychology, 19, 298-301

25 Hastings, R.P., Allen, R., McDermott, K. & Still, D. (2002). Factors Related to Positive Perceptions in Mothers of Children with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 269-275

This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.

First published 2011. Review 2014.

 

 

Page last updated: 10/06/2013 16:14 
 
 
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