Editorial
Supporting Parents and Families: A critical, informed approach
Joan Livesley
Senior Lecturer in Child Health, School of Nursing, University of Salford, Manchester, United Kingdom
Tony Long
Professor of Child and Family Health, School of Nursing, University of Salford, Manchester, United Kingdom
PP: 288 - 290
Article Text
Support, often imbued with positive connotations has come to mean a great many things to different people. The most positive perspective portrays support as a helpful, friendly intervention which is welcomed by the individual in need and helps with efforts to improve, tolerate or adjust to an undesirable situation. As with many concepts in health care, it is tempting to accept the apparent simplicity and inherent benefit of support into professional values without examining what is really going on. A more sceptical view suggests that the concept of establishing and providing 'support' is central to driving through political expectations that seek to re-establish 'family values' in the context of increased individual responsibility and a reduction in the provision of institutionalised care. An even less favourable perspective sees support as necessary for families or parents who cannot be trusted to manage without external professional intervention; or worse still, support becomes corrective and almost compulsory in a culture of blame.
If the need for support observed by the professional is different to that perceived by the parent, it is quite possible that the planned intervention may not match the priorities and wishes of the intended victim. Given restrictions on available resources, needing will never automatically translate into getting; and in many instances, the values and preferences of the nurse involved in the encounter may be fundamental to the final decision of what is or is not provided. It seems to us that there are four necessary conditions for reaching an acceptable compromise between the professional and parent on what support is needed and then given; shared involvement, shared information, shared consensus and shared agreement. Each element is necessary to ensure the intended outcome is that hoped for by the parent or family.
Too many people offer what they determine to be support without engaging with those on the receiving end to make sure that what is offered meets what is wanted. If only we could spend half as much time acting on what we perceive to be the problem, and twice as much time listening to the problem as it is understood by those who are most affected, we could then engage in effective negotiation of an agreed solution in order to arrive at an acceptable outcome for all. We need to remember that each individual has their own understanding and meanings of their own situation and needs, and these are always unique.
During one research interview in a study by TL to establish how parents cope with excessive infantile crying, a mother told of her reaction to her mother's offer to give her a break by taking the baby out for a few hours. Most of us would see this as supportive and an effective strategy to help the exhausted, despairing mother. It was certainly well-intentioned, and, given the practical implications of the offer (pushing a pram around for a few hours with a screaming baby, hearing the ‘tuts' and seeing the disapproving looks), it was a generous offer. Yet it wasn't what the baby's mother wanted. In fact, it was likely to make matters even worse. ‘I don't want you to take the baby away from me,' she said. ‘I want you to help me to cope with him here.' How devastated would she have been if her baby had been quiet for his grandmother only to scream again on return to his mother? Such beneficent ignorance can also characterise nursing efforts to support parents and families.
Further evidence of this was apparent in research interviews undertaken by JL with parents and children who had recently been in hospital. The participants recounted how the information given or actions taken were often inadequate for them to advocate and manage their own needs. It was not that the parents and children had failed to assess their needs for support; rather, they found it difficult to get the professionals involved with their care to act on the needs they had identified. This varied between expectations that one mother could and wanted to engage in daily catheterisation of her son at home despite this causing a great deal of distress to them both, to the father who, after waiting two hours for the appropriate medical staff to assess his daughter's needs, was told there would be a further delay in treating her. The second delay was due to the hospital operating an on-call out-of-hours pharmacy service. The pharmacist lived some distance from the hospital, leaving a desperate father to cope with his child who was very distressed and in pain. In desperation, he offered to drive to a local pharmacy to get the medication needed by his daughter.
Not all families are able or ready to accept support. Tennessee Williams once declared ‘I gave up visiting my psychoanalyst because he was meddling too much in my private life.' Some aspects of support may require more intimacy or intrusion into personal aspects of life that the support becomes unacceptable to the individual. Many families and parents rely on support from family members, friends, neighbours, work colleagues and voluntary workers. There is much evidence to support the contention that those who have or perceive they have adequate social support fair much better than those who do not. Yet, informal, community-based, social support networks are often under-utilised by professionals who work to codes of conduct and confidentiality rules that limit information to those with 'a need to know', often interpreted as only other professionals.
Understood in this context, support is a particularly vague term, and, on its own, fails to signify in sufficient detail who the benefactor will be. This is particularly problematic when family members' perceived needs and preferences differ from those of the professionals. Efforts to support parents and families can be especially difficult because there are so many factors that can exert an effect and because success is so difficult to estimate and to express. Lack of expressed goals or timescale (common enough when the impulse is to react quickly to apparently clear situations of need) further confounds rigorous evaluation. Nevertheless, evaluation is vital if lessons are to be learned about supporting individuals, groups or populations. Sadly, there is evidence that while there are notable areas of achievement, we often overestimate our success in this field, and many areas of need are left unmet. UK children have been ranked 21st out of 25 European Union countries considered in a league of children's well-being. We don't know of a comparable league table in which Australian or other children are ranked, and we cannot be certain that unhappy children make for unhappy families. However, it is possible that such a relationship exists.
Social factors may be far more influential than health factors in creating the need for support and in arriving at acceptable solutions. Poverty, unemployment, poor housing, and other factors are notoriously difficult to address, but all exert a profound impact on parenting and family life. Above all we must find out what the need for support is from the parents' perspective as well as the professional's, and then negotiate the solution.
Finally, the ability of the family or parents to care for children is based on the uncritical notion that families can and do represent the children's best interest. While it would be fair to suggest that the majority of parents and families do their best to represent the child's best interest, some are unable to do this and others deliberately set out to malevolently disregard, misrepresent or harm their child.
For these reasons and others, the more important aspects of support make it necessary to spend more time with parents and families: more time listening, more time sharing information, more time advising on choices and options that are available, and more time to facilitate contact with other agencies, both voluntary and state funded, rather than rely on direct intervention from nursing services alone. To misquote Jimmy Durante: ‘Nurses often have a slight speech impediment. Every now and then they stop to breathe.'
So, could we take more time to listen? More time to listen to parents and families working to do the best for their children. More time to listen to children who know and can tell us what is going on in their lives. More time to share involvement, more time to share information, more time to reach a consensus, and more time to agree on what support and actions would most benefit those in need. To do otherwise may lead to an uncertain future for children, parents and families - and leave us wondering about having children at all!
Man hands on misery to man,
It deepens like a coastal shelf
Get out as early as you can
And don't have any kids yourself
(Philip Larkin, This be the verse, 1974)
eContent Home
