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			ORIGINALS
			Perception and expectations of mothers and caregivers of seriously disabled children regarding the received health attention María Isabel Cruz-Escobosa,1 Juan Francisco Sorroche-Rodríguez,1 Francisco Prados-García2 1 Enfermeras Comunitarias de Enlace. 2 Adjunto de Enfermería. Zona Básica de Salud El Ejido, Almería (España) Mail delivery: Mª Isabel Cruz Escobosa. Distrito Poniente de Almería. C/ Skinner, s/n 04700 El Ejido, Almería (España) Manuscript received by 5.07.2006 Manuscript accepted by 22.09.2006 Index de Enfermería [Index Enferm] 2006; 54: 15-19
	How to cite this document
	Cruz Escobosa MI, Sorroche Rodríguez JF, Prados García F. Perception and expectations of mothers and caregivers of seriously disabled children regarding the received health attention. Index de Enfermería [Index Enferm] (digital edition) 2006 54. In </index-enfermeria/54/e6360.php> Consulted

Introduction

    According to the 1999 Survey on Disabilities, Handicaps and Health Status (EDDES), 9% of the Spanish population shows some kind of disability, and nearly 50.000 of them are under 6.¹ In the research undertaken in Andalusia on informal attention,² 7% of the families with attention-requiring children had, at least, one child with a disability or handicap.
    Legislation aimed at the protection and development of the rights of these children is included in several regulations: Declaration of the Rights of the Child, United Nations General Assembly, 1959, Spanish Constitution, article 49; II Action Plan for disabled people 2003-2007; Decree 137/2002, 30 April on the Plan of Support to Andalusian families; III Andalusian Health Plan; II Quality Plan of the Health Office of the Regional Andalusian Government, Improvement Plan "caring the carers" 2005-2007 in Andalusia.
    The specialist liaison nurses at El Ejido (Poniente de Almería District) have undertaken an active recruitment of mothers who take care of seriously disabled children. Information was requested from paediatricians and nurses from the Zona Básica de Salud (Basic Health Area), ZBS. After an assessment of the different cases, it was also observed that child-caregivers (both women and men) had all the necessary information for their children's basic care, but they showed a deficit with regards to the emotional and communication areas, as well as an ignorance of the existence of the community liaison nurse to get to know all the possibilities offered by the System, so optimising the available resources.
    The objectives of the current research were: (1) to know about the perceptions of caregivers of seriously disabled children in the ZBS at El Ejido with respect to the attention received within the Andalusian Public Health System, identifying strong and weak points, and (2) to identify proposals of improvement for a comprehensive attention, both for the children and their carers.

Methodology

    Type of study: qualitative design. Data collection technique and analysis: focus group.³ Subjects of study: mothers and fathers with seriously disabled children between 4 and 12. Type of sampling: purposive. Participant selection: women carers of children with serious disability that had attended workshops previously celebrated and who accepted to take part in the focus group. Subsequently, a literal transcription of the recordings was made and the paragraphs referring to each category were selected and placed into groups. Opinions were analysed, pondering strong and weak points. Result validation: the participants were summoned again in order to check the results.
    Ethical aspects: the participants were informed on the aims of the research and the methodology that was to be followed. They were asked for consent, always guaranteeing complete confidentiality, putting special emphasis in the fact that the group development would be video-recorded. In literal transcriptions, no real name or possible identifying features have been used. In the same way, every time there was a reference to a professional, it was replaced by the corresponding category.
    The study was approved by the Ethic Commission of Poniente District.

Results

    Regarding the outset and diagnostic of the disease, the participants consider they could have become aware of it earlier, and in some cases they could even have avoided it: "(GFEB): when he was born, I was told: the disease should have been detected in the first months' visits to the hospital, because the spine is the first thing in developing".
    They also think they have not been treated as diligently and quickly as they thought it was necessary: "(GFSD) Then she was sent to Torrecárdenas hospital on the grounds that the girl was blind, we stayed there for two weeks and the ophthalmologist kept on refusing to see her".
    As for the personal repercussion of becoming aware of the disease, they voice ambivalent feelings. The initial reaction is one of depression and anguish, although they refer afterwards to the need of fighting and overcoming the problem: "(GFMP2) It has been a great change for me because I already had a 4 years-old son and I was very happy with the arrival of my son F., but when they tell you what he is suffering from, your life turns upside down; then you tell yourself: you have to get out of this at all costs, it is not a matter of you, but of himself".
    Regarding the repercussion on their own families and on themselves, they declare that it was a complete shock: "(GFMP1) it affects you psychologically a lot"; (GFEB) it affects you so much".
    All them had to leave their works so they can take care of their children properly: "(GFMP1) I used to work. but I had to quit my job, I had to devote my time to my son, because he needs more care".
    They also had to change home (for adaptation reasons) and car, what meant for them an increase of family expenses that were hard to assume in some cases: "(GFMP1) it depends on your husband to earn a good salary. I have changed my home, the mortgage rises. I had to get a bigger car because of the boy, because it was impossible to place the wheelchair into the old one".
    They see themselves indispensable in the care of their disabled children and they say their husbands do not involve themselves enough in the caretaking tasks: "(GFEB) imagine I get ill; who bathes the boy?, then; who puts him the catheter?, who takes him to school?" (GFPC) it is also our fault, since we think that nobody will do it the way we do ourselves".
    Generally, they voice a lack of effective family support and time for self-care: "(GFEB) a thing that worries me most is the case that I should myself undertake an operation"; ("GFMP1) because mine is the last thing".
    As for professionals, they consider that specialists do not have the professional status they are assumed to have, since they do not examine the child the way they regard it necessary and they fail to send them to other specialists to continue the treatment: "(GFEB) When he was implanted his first valve. it began to go wrong and I realized it myself prior than the doctors"; "(GFSD) then, next time I will come to see you alone, as I have brought the girl here with me from El Ejido and you do not have even touched her a hand"; "(GFSD) the neurologist do not send her to the rehabilitation doctor on the grounds that it is not the rehabilitation doctor's affair; this one says it is a matter of the neurologist, so." "(GFEB) I am aware my son is not going to make any progress but. rehabilitation prevents him from getting worse".
    They say specialists do not care the treatment towards them and their children, something they regard crucial for a comprehensive treatment: "(GFMP1) the throat and nose specialist saw me. he was really unpleasant to me. I was new to all this and he told me that all the children were little brats. and that I did not have a reason to pay him a visit":
In some cases, they make some positive reference, however: "(GFEB) paediatricians treated me quite well in the ICU. the rehabilitator was very. then she explained to me what she had to do to him, and, besides taking care of the child, encouraged us".
    They complain also for the lack of information given by the hospital professionals: "(GFEB) there are certain doctors. you have to ask them, what about this? And about that? They explain nothing to you."
    As far as specialized nurses are concerned, they generally have a good opinion on them, although they make some exceptions: "(GFPC) it depends, you can find a lovely person, or, sometimes, a bad one falls to your lot".
    In Primary Care, their paediatricians and nurses inspire full confidence in them and they regard them accessible, competent and close. They always show themselves available and make easier for them their stay in the Health Center: "(GFEB) they have helped me quite well in everything I needed. Many times.. The nurse has come and I have told her 'look, you can arrange an appointment for me for next Tuesday afternoon and I will bring the child along' Then the nurse has made it and no problem".
    They consider the figure of the liaison nurse as a positive one, as they have seen how she solved for them the problems they had to face in the different welfare levels. Some time ago, they were told that such problems did not have a solution: "(GFMP1) you also helped us [referring to a treatment that had been applied to their son in Torrecárdenas Hospital and now he was receiving it in Hospital de Poniente]. You pressurized them and look, you got it, he is receiving it here".
    Likewise, they regard her as a an approachable professional who gives them further information and they can rely on her for having solutions: "(GFMP1) because your are who give us most information"; (GFEB) and at least, we can speak to you frankly, we can consult you and you clarify our doubts because."; "(GFPC) as I have your mobile phone number I can call you.".
    The "workshops" organized by liaison nurses they have attended are seen as quite positive experiences, since they psychical and physically reinforced to carry their task on: "(GFMP2) that's why you finish up so well; you come here. and after that you go home better. you can put up with the week better."; "(GFPC) at least we can relieve our feelings"; (GFMP1) that thing of breathing is very useful".
    Regarding the Health System, they see the specialized hospital as something effective and gives them a quick answer to the expectancies mothers have: "(FEB) in Barcelona, in only ten days my daughter was done all the proofs she had not been done in one year, sorry. in ten days she was done everything she has not been done in five years.".
    The general hospital is overcrowded for them: "(FEB) well. that place is saturated". Regarding emergency attention in Torrecárdenas hospital, they do consider it to be positive because the hospital has paediatricians among the staff: "(GFPC) In Torrecárdenas, a paediatrician does see him". In Hospital de Poniente they do not use the emergency service, as they lack paediatricians: "(GFSD) they are children with serious medical problems, but in Emergencies they are seen by a general doctor, not by a paediatrician.". Likewise, they regard as negative the lack of resources of the hospital: "(GFMP1) it is a shame that my son must use small-sized nappies in Hospital de Poniente. And when he is in hospital, they do not give me nappies! They haven't got any!"
    An important problem for mothers is the accessibility to hospital because the shortage of reserved parking space and the lack of sensibility shown by general population towards their problems they use the reserved ones: "(GFMP1) very bad. They do not respect the parkings for disabled people.".
    In the Health Centre the treatment given by professionals is seen as something positive, and so they regard accessibility and the facilities that they find before any difficulty arisen; and now it has been improved by the Plan de Atención a Cuidadoras de Grandes Discapacitados (attention plan for carers of seriously disabled people) because, by including them, they have found a solution to the difficulties that were still to overcome: (GFMP2) we have not had any trouble here"; "(GFMP1) and the card you have given us has meant for us a lot of facilities. We are coming on Mondays for the moment. I came here, approached the reception desk, I was given a number." The thing they are most upset about are the requirements when sealing the prescriptions: "(GFMP1) the worst thing of it all is to face so many impediments when sealing the prescriptions...".
    Regarding other institutions, the associations to which patients recur have a good general assessment, although they do not attend them frequently. The attention they receive depends on he persons managing them and on their place of residence: "(GFMP1) I have no problem. They send me information whenever they have it; used to be better before; now the manager has been changed and the new one, well, she worries about, but.."; "(GFPC) Catalonia and Andalusia are different worlds".
    They state that the comprehensive rehabilitation treatment that the associations designated by the Andalusian Health Service offer them arrives too late and it is insufficient: "GFMP1) I've been going to Almería for two years; I could have been given facilities for attending the doctor here; they told me 'here in El Ejido, you have to wait for one year', so I told them 'arrange for me a to the doctor in Almería. I am carrying him to Almería right now.'; "(GFSD), we do have a doctor, but sees up to 6 years children only". Some of these associations even have architectonic barriers: "(GFPC) Asalsido you not have the guts of carrying the girl's wheelchair nine steps upwards".
    With regards to the schools their children attend, they mainly refer to the lack of teachers to tackle the problems of the kids: "(GFMP1) There are two [teachers] in my son's school and one of them told me that after 12,30 my son would not be changed nappies. Any of the children would. So, if one of them had done a poop at 12,35, he would remain dirty until two o'clock in the afternoon.".
    As far as resources for medical attention at home are concerned, parents place a special emphasis on the fact that they need some means to pay adequate attention to their children, although they show their satisfaction when referring to other ones: "(GFMP1) I have the compressor and the bed only because I bought them myself"; "(FEB) I have no problems with catheters, nor gloves, nor anything like that".
    Regarding improvement proposals, they prefer: the continuation of treatment and monitoring of the disease by the same reference professional: "(GFEB) I would like to attend the same doctor all the times.", a closer, empathetic treatment and adapted care to the peculiarities of each patient: "(GFMP1) pleasantry and giving us facilities to do things. and we do not have anything of these"; "(GFSD) because these children cannot speak, they cannot express what they feel. nor where they have pain or where not", of being treated in an unique session, making care possible for them: "(GFMP1) we ask not to have to attend three or four times. I went to the ophthalmologist last Monday. and when I finished I was told I had to make a new appointment for the following Thursday"; "(GFPC) they come up with all sorts of snags. all sorts". To receive the necessary treatment and assistance without economicist determining factors: "(GFEB) for prescription purposes, these children need to be pensioners.because my son has a lot of expense. and what can I say about nappies.?"; "(GFMP1) I have had to buy an elevating bed, because my son asphyxiates when sleeping lying down". To improve the communication and the information supplied to them on the disease and the attention required: "(GFEB) We want them to explain what it is, because some doctors. you nearly have to extract words from them.he arrives. and says nothing to you."; "(GFMP1) We don't want technical words"; "(GFMP2) We need a little more listening". Physical presence of paediatricians in the emergency services of every hospital, especially in the regional ones, the closest to them: "(GFMP2) there should be a paediatrician in the Emergency service". To increase the number of paediatricians: "GFEB) the paediatrician is attending paediatrics and healthy children at the same time; they could have one more paediatrician". To increase the number of telephone lines in order to arrange appointments easier for them: "(GFMP1) I think they should have on more telephone line.". To increase the number of teachers for education for children with special needs and specialized staff: "(GFPC) First of all, teachers should be specialists in children with special needs". They demand that the "workshop" for children carers could be periodically lined as part of their attention: "(GFMP1) .better if we have to come here, as a compulsory task".

Discussion

    The contribution of the current study on the perception that mothers having to take care of seriously disabled children are not comparable to other studies that try to reach similar goals, as no similar researches have been found at a national level. Only at an international level some studies have undertaken this subject from other perspectives. For example, the study by Rahi JS et al,⁴ referred to the needs of families with visible damaged children shows how, as in other disabilities in childhood, the most important needs during diagnosis period are informative ones, including that of educational and social services, emotional help by professionals, by formal and informal social nets and groups of help. Programs with reference workers were set out for these children's families in the context of multidisciplinary teams aimed at the treatment of the disability, making easier the coordination between health, social and educational services. It was reflected the fact that general performance must be aimed at setting in motion these programs for the offering of information, assistance and liaison between them and the specialized reference workers.
    The study by Law et al⁵ concludes that parents' satisfaction towards the services is strongly influenced by the perception that they are more family-oriented. The number of visits to the doctor, and health and development problems of their children were less frequent in the places where these services were used. The ways for these organizations can improve satisfaction through such behaviour are subjects to deal with.
    We are dealing with a minority population demanding a great deal of attention, as they show a high degree of dependence. The people that carry out this continuous care are mainly mothers and they suffer the harmful effects in their own health, as described in many studies and that are a consequence of long-lasting cares.⁶ In the presentation by García Calvente, he describes how assuming this role supposes an important impact on the quality of life and the carer's own health.⁷ To be a children carer can be detrimental to health and economy, among other aspects. So, very often, carers become patients of the health services and users of the social services.
    Secondly, one of the functions carried out by carers is acting as intermediaries and interlocutors between the child they care for and the health system itself.
    It is carers who generate the demand of services, who make use of them and the ones that generate the opinion on the quality of the service they receive. In spite of becoming customers of the health system in the last years, they do not see themselves as such. Likewise, this new conception has neither been assimilated by some professionals of specialized attention. Although the reason for this is not the subject for the current study, we think it could be due to the lack of personalization at this level, so it could be a purpose for subsequent research.
    On the other hand, there is a wide set of regulations aimed at reaching a new approach to disability, assuming that a substantial part of the difficulties and disadvantages of these people are attributable not only to their own deficits and limitations, but also to the lacks, obstacles and barriers existing in their social environment. So the response demands for changes in the immediate environment, among them school, involved associations, social services, etc.
    In this sense it can be noticed nowadays a special sensibility in this regard aimed at the strengthening of these policies.⁸ However, from our study it can be inferred that mothers do not feel there is a coordinated performance of all the administrations involved in order to modify this environment and in addition, they regard their relationship with these administrations more as an obstacle than an aid for them.

Conclusions

    It seems necessary to bear in mind the vision of mothers towards their children's disease due to the high degree of knowledge they manage to acquire on the individual repercussion that the disability exerts on each one and also on the symptomatology and alarm signals. So, for professionals to assume this as valuable information will imply an improvement in the quality of the attention to be paid both to children and their carers.
    Mothers regard as quite valuable to receive adequate information in a clear and non-technical language on the disease of their child. Likewise, they prefer knowing about the concrete diagnostics as soon as possible in order to start the adaptation process.
    After a so extremely hard experience as it is a disease during childhood, the degree of tolerance of these mothers towards frustration is considerably high.
    The attention received by the mothers of these children with serious disabilities is different depending on the level of health care they are referring to; in general, they feel closer and find less difficulty when dealing with first care professionals.
    They regard their passage through the health system in general, and through other institutions they have had to relate with, as a continuous steeplechase, full of obstacles and difficulties, so they feel lonely in the eyes of the attention dedicated to their children, that not always is resolved satisfactorily with the help of their own relatives.
    Any intervention of the social-sanitary system is destined to cover the patient, the carer and the family in general, to increase the provisions offered, especially the rehabilitation treatment, to provide resources to minimize de economic and emotional overload and to facilitate the communication among the family members, with health professionals responsible for the clinical monitoring and to foster opportunities for the socialization and schooling of the child.
    For this reason it seems necessary to establish a series of mechanisms with a view to a coordinated intervention among the different administrations involved: Health, Education, Social Services, etc.

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