Work dynamics in family care of hemophilic children

Oremland, Evelyn K.

doi:10.1016/0277-9536(88)90316-4

Cited by 8 publications

(6 citation statements)

References 11 publications

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“…(1991 ), for example, suggest that a key role of nurses in terminal care is to help families through what can be seen as a time of transition, the transition of fading away. In order to fulfil the role, it is necessary to appreciate the complex interplay of factors which can affect such a transition, and to realize that the transition is not inevitably smooth and straightforward, as Oremland (1988), studying the dynamics of families with haemophiliac children, found. In complex, potentially life‐threatening situations, it is not surprising that people exhibit changing levels of awareness, nor that those levels of awareness should be affected by particular events and situations, as the context within which they operate changes over time.…”

Section: Discussionmentioning

confidence: 99%

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

Rose

1999

Journal of Clinical Nursing

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This article discusses issues relating to information arising from a qualitative study of the experiences of informal carers of terminally ill cancer patients. Qualitative data analysis, drawing on methods of literary criticism, revealed that information was a key area in carers' experience. The findings are presented in the context of needing to provide individualized care to every family and deal with information needs relating to the illness and prognosis. The question of who is in possession of what information is raised, and the effect that this can have on couples is discussed, together with the issue of false information which carers may receive. The discussion centres on the complexity of understanding carers' information needs and considers how these are affected by the context within which carers operate. The work of Glaser and Strauss on awareness contexts is discussed in this respect. Finally, the importance of the nurse's role as a sensitive mediator of information is considered.

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Section: Discussionmentioning

confidence: 99%

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

Rose

1999

Journal of Clinical Nursing

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“…There are additional responsibilities associated with implantable venous access devices (IVADs). People with haemophilia and their families must learn to cope with mistakes and to function effectively in the face of an emergency [45]. The reciprocal responsibilities of health care professionals and families were articulated in the second Canadian conference (1998) [46].…”

Section: Responsibilities For Home Carementioning

confidence: 99%

Home management of haemophilia

et al. 2004

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The demonstrated benefits of home care for haemophilia include improved quality of life, less pain and disability, fewer hospitalizations, and less time lost from work or school. Although reduced mortality has not been demonstrated, the substantial increase in longevity since the early 1980s correlates with the introduction of home treatment and prophylaxis programmes. These programmes must be designed and monitored by haemophilia treatment centres (HTC), which are staffed with professionals with broad and complementary expertise in the disease and its complications. In return, patients and their families must be willing to accept the reciprocal responsibilities that come from administering blood products or their recombinant equivalents at home. Patients with inhibitors to factors VIII or IX pose special challenges, but these complications do not obviate participation in home care programmes. Home care was an essential prerequisite to the introduction of effective prophylactic factor replacement therapy. Prophylaxis offers significant improvements in quality of life, but requires a substantial commitment. The use of implantable venous access devices can eliminate some of the difficulty and discomfort of peripheral venous access in small children, but brings additional risks. The future holds the promise of factor concentrates for home use that have longer half-lives, or can be administered by alternate routes. Knowledge of patient genotypes may allow treatments tailored to avoid complications such as inhibitor development. Gene therapy trials, which are currently ongoing, will ultimately lead to gene-based treatments as a complement to traditional protein-based therapy.

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“…Investigators have explored sib reactions to serious illness and death from various illnesses [Koch-Hattem, 1986;Krell and Rabkin, 1979;Martinson and Campos, 1991;Pollock, 1986;Spinetta, 1981]. In X-linked disorders (e.g., hemophilia), Oremland [1988] found the well sib overwhelmed with helping tasks, and noted the expectation for sibs was to place no further demands on the overburdened family. In Duchenne muscular dystrophy, Solow [1965] cautioned healthy sibs should not be expected to do the adult job of accepting special responsibilities, because denial of their own needs as children may lead to pseudomaturity.…”

Section: Introductionmentioning

confidence: 98%

?My crooked vision?: The well sib views ataxia-telangiectasia

Fanos

1999

Am. J. Med. Genet.

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The ataxia-telangiectasia gene (designated ATM) has been identified by positional cloning. Retrospective studies in cystic fibrosis (CF) have shown that the illness and death of a sib have far-reaching ramifications on the surviving sib's life. However, there have been no studies on sibs of children and adults with ataxia-telangiectasia (A-T). Thirty-five sibs from 24 families, including 26 adults and 9 adolescents, were drawn from the University of California, Los Angeles; the A-T Clinical Center at the Johns Hopkins University School of Medicine; and the A-T Children's Project Interviews indicated that, unlike CF, the visibility of A-T caused less resentment of time or attention given to the affected, less guilt, and less identification or idealization of the affected, but more embarrassment and shame. It may be said that, unlike CF, the dynamic is one of burden rather than trauma. The specific phenotypic expression of a genetic illness predisposes the way in which the well sib will encounter problems. In A-T affected families, one must help families locate caregiving resources so they will not burden their well children; sibs need help with managing feelings of embarrassment and shame. Geneticists must be alert to understanding characteristic differences of disorders they encounter in order to offer the most appropriate support to affected families.

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Work dynamics in family care of hemophilic children

Cited by 8 publications

References 11 publications

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

A qualitative analysis of the information needs of informal carers of terminally ill cancer patients

Home management of haemophilia

?My crooked vision?: The well sib views ataxia-telangiectasia

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