QUANTITATIVE STUDY - LITERATURE REVIEW
The value of immunoglobulin G (gammaglobulin) replacement therapy for antibody immunodeficiencies has been known since 1952, following the report by Bruton (1952) in which he described a young boy with a primary antibody deficiency. In this paper he demonstrated, for the first time, the prophylactic effect of subcutaneous replacement immunoglobulin G (IgG) (Hansen et al. 2002). Since then, although there have been changes in the method by which IgG is administered from subcutaneous (SC) to intramuscular (IM) to intravenous (IV) and now back to subcutaneous, the underlying value of replacement IgG therapy in primary immunodeficiencies has been demonstrated by numerous studies (Gardulf et al. 1993, Chapel 1994, Waniewski et al. 1994, Hansen et al. 2002). Although there are potential side effects to this treatment, these are often associated with IM and IV therapy, and have been found, in most cases, to be infusion-related (Misbah & Chapel, 1993, Brennan et al. 2003). In any case, most of these side effects are judged to be minor reactions to the therapy (Gardulf et al. 1995(a), Gardulf et al. 1995(b), Gardulf & Hammarström 1996, Chapel et al. 2000, Nelson et al. 2000, Hansen et al. 2002).
Because of the proven safety and efficacy of IgG treatment for primary antibody deficiencies during the 1980s, home treatment programmes for IV or SC self-infusions being given at home by the patient, partner, or parent were introduced (Brennan 1987, Chapel et al. 1988, Webster et al. 1988, Brennan 1991, Gardulf et al. 1991, Gardulf et al. 1995(c)). Initially these were for adults, but home infusion for children quickly followed (Gardulf et al. 2004). Home therapy Ig infusion is now widely spread throughout Scandinavia and the UK, and has been shown to be more patient and family-friendly (Chapel et al. 1988, Gardulf et al. 1991, Abrahamsen et al. 1991, Cochrane 1997, Gardulf et al. 2001, Henderson 2003).
Gardulf et al. (2004) looked at the quality of life of both adults and children undergoing sc Ig therapy in Europe and Brazil. In this study, they found that children who changed from hospital- to home-based Ig therapy experienced improved school and social function in the children, as well as there being a reduction in emotional distress in their parents. They also found that there were fewer limitations in the families' activities. The adults who changed from hospital- to home-based therapy reported an improvement in social functioning, mental health, and general vitality. Overall there was an improvement in both quality of life and treatment satisfaction. Henderson (2003) reported on a patient satisfaction survey of home Ig therapy undertaken at Papworth Hospital NHS Trust. She found that overall the patients benefited from home Ig therapy, with patients reporting that they were more relaxed, and that the treatment was more flexible and could be fitted in with their daily routine. The patients also reported that there was less disruption to the family. The only disadvantage mentioned by the patients was the loss of the social aspect of meeting others in a similar situation; this could possibly lead to a feeling of isolation. Positive aspects of home Ig therapy for immunodeficiencies, such as independence, flexibility, freedom and control, have been reported by many patients in other reports (Gardulf et al. 1991, Cochrane 1994, Gardulf et al. 1995(c), Abrahamsen et al. 1996, Chapel et al. 1998, Gardulf et al. 2004). The further positive qualities of self-esteem and confidence were also seen in patients accessing home Ig therapy (Cochrane 1994, Abrahamsen et al. 1996, Cochrane 1997). Negative qualities brought to the fore with home Ig therapy are few and far between, but Abrahamsen et al. (1996) mentioned anxieties and worries of the parents of children undergoing home therapy, as they assumed greater responsibility for the medical care of their children.
An improvement in rates of infection and ill health as a result of home Ig therapy for primary antibody deficiencies was discussed by several papers (Gardulf et al. 1991, Gardulf et al. 1995(c), Abrahamsen et al. 1996, Gardulf et al. 2004). The safety of home Ig therapy has not been a problem as long as guidelines for administration as well as good education of patients and families occurs prior to commencing home Ig therapy (Kobayashi et al. 1990, Hammarström et al. 1991, Chapel et al. 2000, Gardulf et al. 2001, Hanson et al. 2002, Brennan et al. 2003). Nelson et al. (2000) do, however, report the case of a nine-year-old girl who developed a septic meningitis due to IVIg therapy. However, it is pointed out by Nelson et al. (2000) that this is a very rare complication, and indeed it resolved once the girl was changed from IV to SCIg therapy.
One of the benefits of home Ig therapy for antibody deficiencies is that of reduced cost - both to the hospital/health service as well as to the patient/family. Many researchers have commented on this advantage, including, Chapel et al. (1988), Gardulf et al. (1991) Abrahamsen et al. (1996), Cochrane (1997), and Henderson (2003). The cost benefits to the hospital/health service include savings on the time of health professionals, as well is less use of physical services such as hospital beds. For patients and families, the cost benefits include not having to take time off from work, as well is savings in fares to the hospital or health centre.
The role of nurses, particularly in the education and support of patients and families, in home replacement Ig therapy is described in several papers (Banks 1994, Cochrane 1994, Russell 1998, Henderson 2003). However only Cochrane (1994) has looked at the role of the nurse as regards undertaking home visits. In an audit of patients on home Ig therapy, Cochrane (1994), admittedly on a small sample of 32 patients, found that 75% of respondents felt that home visits from the specialist nurse practitioner (SNP) were very important, and 25% responded that they were important. There appears to have been no other research on the importance of home visits by SNP's, although at a conference of immunology specialist nurses in 2004, there was a debate on whether or not the nurses themselves felt that it was important to visit the patients who were on home Ig therapy (Laycock 2004). The results were quite evenly divided between those nurses who felt that it was important that there were home visits and those who did not feel that it was important. A paper by Zarbock (1997) described the importance of the role of nurses in home based Ig therapy for neonatal RSV infection. However, the nurses in this survey are responsible for the actual giving of the Ig therapy as well is for the general care of the baby. In addition, they were involved with working with the family and with supporting them. Other home based infusion therapies - when nurses visit the home, such as blood transfusions, have also been described (Benson et al. 1998). But again, these visits are to actually give infusions, rather than to support the patient or family undertaking self-infusion.
An interesting qualitative study on psychosocial home visits by health professionals in the case of cancer treatment (Ross & Johansen 2002) however, found that visits to patients' homes resulted in better balanced contacts between patients and professionals, than did visits to hospitals. They conclude that 'most patients requested personal involvement and continuity from their visitors, preferably a healthcare professional capable of providing health information and practical help' (pg. 350). Home visits do occur within other groups of patients and, for example, have shown a significant decrease in the readmission rate of stroke patients (Andersen et al. 2000). There have also been shown to have a significant positive effect on survival, readmission rate, and the quality of life of patients with congestive cardiac heart failure (Stewart et al. 1999). They have even been shown to reduce the mortality rate and admission to hospital of elderly people in Denmark (Hendrikson et al. 1984, Hansen et al. 1992, Hansen et al. 1995). So it is possible that the role of the nurse in home visits for patients on home Ig therapy is not for the actual treatment, but more for the psychosocial support and confidence that can ensue for the patient and family.
Although very little has been written about the value of nurse home visits in reducing the rate of infections in patients undertaking home Ig therapy, much more had been discussed about the psychosocial benefits of such visits. As Ross & Johansen (2002:351) describe, 'home visits by a healthcare professional can be seen as a type of formal social relationship'. According to Due et al. (1999), the conceptual framework of social relations has two dimensions, namely structure and function - these being seen as the subconcepts underlying social relations. The structure of social relations is concerned with aspects of formal relations and social networks, whilst the function of social relations is concerned with social support, social anchorage, and relational strain (Due et al. 1999).
Structure of social relations is seen in people who represent either formal or informal relations (sometimes the same person can represent both) and include the frequency of social contacts between people. Formal relations are generally with professionals, e.g. nurses, doctors, social workers, teachers, etc., whilst informal relations are with other members of the family, friends, and close colleagues. These make up the social networks of an individual (Due et al. 1999, Ross & Johansen 2002).
On the other hand, the function of social relations is seen within the context of the interpersonal interactions that occur within the different facets of the structure of social relations. Within these interpersonal relations are found the qualitative and behavioural aspects of individual social relations, including social support, social anchorage, and relational strain (Due et al. 1999, Ross & Johansen 2002). (Social support has been defined by Due et al. (1999) as the resources that other people bring to a relationship.) According to Ross & Johansen (2002), although there are many aspects to social support, the most frequent attributes that are defined by social support are emotional, instrumental, informational, and appraisal support (Langford et al. 1997, Due et al. 1999).
The role of the nurse, when making home visits, is therefore not so much the physical/medical care of the patient and family, but rather the provision of their emotional, informational, instrumental, and appraisal support. In the situation where this is not possible, then advice to the patient/family of where they can obtain the support becomes the role of the nurse (Ross & Johansen 2002).
Antonovsky (1988) proposed the theory that a strong sense of coherence is necessary for good health. In other words, it is important to comprehend problems; to make cognitive sense of them as a means to create a sense of predictability, structure, and understanding of the problem/situation. Alongside these, it is also important to be able to manage problems/situations - that is to perceive that the necessary resources are available and within one's grasp, in order to enable one to cope with life challenges. These resources include the confidence in one's ability to act, and also the confidence in one's social network and functioning (Ross & Johansen 2002). Finally, meaningful nursing is important in being able to have the coherence as described by Antonovsky (1988). In this context, coherence can be seen as having areas of life that possess emotional significance (Ross & Johansen 2002).
Ross & Johansen (2002) explore the effect of psychosocial interaction on a patient's sense of coherence. They explain that psychosocial intervention could help to offer predictability and cognitive understanding of a problem/situation, and subsequently improve health by the establishment of a formal relationship, which in turn will help the patients and families to mobilise and organise their own social network(s). Ellis-Stoll & Popkess-Vawter (1998) suggest that, within this context of coherence and understanding of problems and situations, home visits may possibly empower patients by the provision of both information and social support.
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