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In 1991, Straudacher wrote 'What does a grieving man do? He does what he needs to do to take care of himself. It may mean that he'll carry grief as a solitary burden in his head and heart for years. It doesn't have to be that way.'[4] James May[5], who developed arthritis as a teenager, now directs the Fathers Network in America. He advocates greater recognition of the needs and contribution of fathers of disabled or sick children. Part of his emphasis includes encouraging fathers to express their feelings first to themselves, and then to their family, and to express their need for effective support. Just a Shadow[6] is a recent practical report about research with fathers of disabled children in Britain today that also illustrates how fathers' needs are largely unrecognised, poorly understood and mostly unmet.
The impact upon fathers seemed less consistent that that reported on mothers. Some fathers said their daily routine was significantly changed by their child's illness, while one father said 'life had changed drastically'. In the early months of struggling with arthritis, parents reported that fathers had more difficulty accepting the child's illness. For example, one father said 'It was like a bad dream. We were looking from the outside inwards at somebody else but it wasn't really us. We couldn't accept or believe it. And a lot of fear, and concern, and stress because we didn't really know very much about the disease.' Other fathers talked about that initial shock, their sadness and the stressfulness of their lives now. They all expressed their belief that it was more difficult for their wives.
In the questionnaire, nine mothers reported that their male partners were unaffected by the child's arthritis. This represented a fifth of families in the study, and was in stark contrast to the universally reported big impact on mothers. A typical comment was 'He was really shocked at first. He tried to support me when they didn't believe us. He came with me to hospital - but he's got to work. You can't expect his boss to keep on giving him time off so he has to concentrate on his job. So I've done the hospital and the physio and the stuff.'
When asked if she thought her husband was affected, one mother wrote 'Not as far as I can see but he may think differently.' When making his video diary, this father took the opportunity to relate how he felt about his daughter's arthritis. He was anxious and tense, and became very upset, especially when trying to explain how as parents they just tried their best, but that no-one helped them prepare for the future. He was affected by the unpredictability of the disease and, like many other fathers, worried about the future. He said 'Never knowing what the next day will bring. Is she going to be alright? What does the future hold? Who knows what's in store for my daughter?' His wife was surprised by his emotion and clear frustration, and this was the first time in the three years since their daughter's diagnosis that he had ever talked about arthritis; even to his wife. It is possible that distress which other fathers experience but do not verbalise, remains hidden to professionals and even to their partners.
Other fathers explained that they often left the house before their children were up and returned home at bedtime, hence missing much of the child's day. The fathers were most often the financial providers for the family, especially where the mother's carer responsibilities limited her availability for paid work. In these U.K. households, the mothers felt their husbands were broadly supportive but these mothers said they coped with the impact of the disease and treatment virtually alone. Fathers reported that their work pattern was disrupted by arthritis because they helped to meet the needs of siblings, such as collecting them from school, occupying them during weekends and supervising them while the other child was in hospital.
Fathers said that they felt more socially isolated from their former friends and some family members who did not understand what it was like living with a child with arthritis. They also had to change their routines and spent less leisure time with other men (at the pub, football club or sports activity). They also felt like the forgotten parent, and were not as informed by or as recognised by professionals.
Other data indicated that fathers rarely took responsibility for the medication or exercise routine and only a few accompanied their child to clinic visits. These are typical comments about the fathers' role:
'She [the child] clings more to the mother and not so much to me.' 'As a father, I feel my wife and myself are much more tired that we should be. Also have less time to myself and work is disrupted.'
Other research has reported that fathers of disabled children had a tendency to work for longer hours than before the diagnosis. Researchers[7] showed that fathers of children with rheumatic disease experienced significant depression, which in the early months could significantly impair how they coped with daily tasks. In addition, fathers experienced significant grief, which remained unexpressed. They were also shown to increase their intake of alcohol.
Research showed that if fathers had close relationships with family members, the child with arthritis developed greater social skills and confidence and fewer behavioural problems. The Timko research also showed a link between the degree of personal strain of parents and the amount of support they could give the child, including encouragement to carry on with healthcare programmes. The researchers recommended that intervention should be focused on reducing parental strain and depression, while bolstering parents' access to social support and helping parents to bolster the child's efforts to do the exercises, taking medicines and use splints as prescribed. Personal experience and research evidence highlights the need for us all (mothers, fathers and professionals) to help parents discuss their thoughts and feelings, and to meaningfully support them so that they can continue to care for their family.
You may be a lone parent by choice, or have a partner who is unwell or absent for most of the time perhaps due to job commitments like for example, long-distance lorry drivers, oil rig workers, and service personnel. The combined emotional and practical effort involved in caring for a child with arthritis is considerable even when two parents are available. Coping as a lone parent is hugely more stressful and can increase feelings of isolation and pressure. Try to find a parents group, a key friend or professional who understands either lone parenting or caring for a chronically sick child.
Different people have different appetites and needs. People also react differently to long-term stress. Most couples experience changes in how they communicate with one another, and how they express or meet each other's needs. Also sudden developments and crises with the child with arthritis can dramatically influence people's hormones. An anecdotal example would be when a child is suddenly hospitalised, it is not uncommon for the mother to miss her period or after the child is out of danger, have a heavy delayed bleed. Conversely, parents may need extra reassurance and loving support during difficult times; but what if you both parties need the extra support?
Both parents are likely to be anxious and very tired, so it is not surprising that many couples struggle with issues about stress, sex and sleep! This is entirely to be expected and 'normal'. Few people seek help, although the majority may feel desperately upset about these issues at different times. There is good counselling support available through different organisations (like Relate) and it is always wise to seek help before the situation has reached crisis point, when the solutions are likely to be more simple and achievable.
These final comments, borne of ten years' experience working with many families, may help, although there are no easy solutions nor solutions that suit everyone.
Personal experience and research evidence highlights the need for us all (mothers, fathers and professionals) to help parents discuss their thoughts and feelings, and to meaningfully support them so that they can continue to care for their family.