Psychosocial functioning of mothers of boys with haemophilia

Haemophilia is an X-linked bleeding disorder, caused by an inherited deficiency of clotting factor VIII (haemophilia A) or factor IX (haemophilia B), and leads to spontaneous and posttraumatic bleeds [1]. In the Netherlands, boys with severe haemophilia receive adequate prophylactic treatment to reduce the risk of irreversible joint damage and to increase quality of life. However, boys with haemophilia (BWH) still endure difficulties and impairments, such as hospital visits, frequent injections and limited participation in (sport) activities [2]. BWH remain at risk for (spontaneous) bleeds. Parents must continuously take into consideration the risks and safety, for boys with severe as well as non-severe haemophilia. In the western world, much of the haemophilia care is thus home based. Parents play a significant role in the care and treatment of BWH. Despite the advantages of care at home (e.g. less hospital visits, more independence), parents report to experience the large responsibility for management of haemophilia, such as administration of treatment by intravenous infusion of clotting factor concentrate, burdensome [3]. In addition, parents of BWH may experience similar problems as parents of children with other chronic illnesses. Research has shown that parents of chronically ill children frequently report anxiety, depression, physical problems and cognitive problems and are more likely to experience greater levels of parental distress and lower health related quality of life (HRQOL) than parents of healthy children [4]. Also, previous research showed that parental psychosocial problems influence the well-being of the child. For example, maternal depression negatively influences children’s adherence to therapy [5]. Up to date, the psychosocial impact of haemophilia on parents has only been addressed in a handful of studies, and results are quite ambiguous. Wiedebusch et al. [6] compared parents of BWH to other paediatric illness groups, and found that parents of BWH experience less impact of the disease on their quality of life and lower psychosocial strains than parents of children with other chronic conditions, such as diabetes. Other studies showed that the parents of BWH are deeply affected by their child’s condition. For example, Beeton et al. [7] showed that, besides feelings of anxiety, helplessness, guilt and worry over their child’s condition, parents also report to be largely impacted by their child’s pain. Especially mothers of BWH are at risk for psychosocial problems compared to fathers because they are usually more involved in the daily care for their child [6]. More insight into psychosocial functioning of mothers is important in assisting professionals [3] and therefore the aims of this study were to: (i) determine the degree of anxiety and depression of mothers of BWH in comparison with a Dutch reference group, (ii) determine the degree of maternal distress and (iii) explore the relation of anxiety, depression and distress (psychosocial functioning) with the HRQOL of their sons. Data were collected within the scope of a larger study aiming to assess the validity and reliability of the haemophilia coping and perception test [8]. BWH aged 8–12 years under treatment in one of six participating Dutch Haemophilia Treatment Centres (Emma Children’s Hospital Amsterdam, University Medical Centre Groningen, Catharina Hospital Eindhoven, Leiden University Medical Centre, Radboud University Medical Centre Nijmegen and Sophia Children’s Hospital Rotterdam), and their mothers, were invited to participate in this study between July 2011 and January 2013, after approval by the ethics committee. All participating mothers gave written informed consent. Mothers were asked to complete three paper– pencil questionnaires at home; one questionnaire concerning socio-demographics of the parents and child, one concerning anxiety and depression, and one concerning parental distress. BWH completed a disease-specific HRQOL questionnaire. Anxiety and depression of mothers were assessed with the Dutch version of the Hospital Anxiety and Depression Scale (HADS) [9]. This 14-item self-report questionnaire includes a 7-item depression scale, a 7item anxiety scale and a total scale. Questions are answered on a four-point scale (0–3), resulting in scores on each scale from 0–21, where higher scores indicate more anxiety or depression. The cut-off score is ≥8 for the depression and anxiety scales, indicating Correspondence: Lotte Haverman, PhD, Psychosocial Department, Emma Children’s Hospital, Academic Medical Centre, G8-136, Post box 22660, 1100 DD Amsterdam, the Netherlands. Tel.: +31 20 5665674; fax: +31 20 6091242; e-mail: l.haverman@amc.nl