COMMUNITY NURSES ’ PERCEPTIONS OF AND EXPOSURE TO CHILDREN WITH SEVERE DISABILITIES AND THEIR PRIMARY CAREGIVERS

In primary health care clinics nurses are faced with individuals of different ages with different problems, ranging from minor ailments to severe disabilities. Particularly vulnerable are those with severe disabilities, with specific reference to those with communication and intellectual impairments because of their inability to articulate their needs, feelings and rights. Community nurses are often the first contact that primary caregivers (parents) of children with severe disabilities (CSDs) have with health professionals and they often remain the only professionals who support and assist these caregivers. It is therefore clear that these nurses need to be equipped with the necessary knowledge and skills to assist caregivers in dealing with their CSDs. This is a descriptive study aimed at determining community nurses’ perceptions regarding disability and their exposure to CSDs. Quantitative (questionnaire) and qualitative (focus groups) methods were used to obtain data. Results indicated that nurses regarded their knowledge and skills in dealing with CSDs and their caregivers as inadequate, despite the fact that they were exposed to them and were expected to provide services to them. A need for knowledge and skill training in this regard was identified.


INTRODUCTION
Since the birth of South Africa's democracy in 1994, a new health policy, namely primary health care (PHC) was accepted in order to address equality in health services given the manpower and resource constraints of the developing world (Department of Health, 1999:4).
The Alma Ata declaration identified PHC as "… essential health care made universally accessible to individuals and families in the community by means acceptable to them, through their full participation and at a cost that the community and country can afford" (WHO/ UNICEF in Rifkin, 1986:240).PHC is thus not only seen as the first level of care, but rather as a reorientation of the health care system from its present concentration on late stage, high technology hospital services to community and preventive services (Willis, Biggins & Donovan, 1999:210).In order to meet the needs of as large a number of people as possible in a culturally appropriate, cost effective way, all possible resources must therefore be utilised (House, McAlister & Naidoo, 1990:18;Stanhope, 1995:50).Consequently professionals began to realise that primary caregiver involvement is central to service delivery, that a high degree of collaboration and joint decision-making between primary caregivers and professionals should be established so that a joint vision and joint decision-making can be achieved, and that the cross-training of professionals and paraprofessionals in providing services to everyone should be highlighted (Chapman & Ware, 1999:105;O'Toole, 1988:324).These three aspects form the basis of a transdisciplinary approach to service delivery -an approach that not only reduces the duplication of services, but one that also addresses the fragmentation that currently exists amongst differ-ent service providers.The transdisciplinary approach is therefore closely linked to PHC as it becomes meaningful within a more comprehensive model of service delivery.
Nurses are the frontline practitioners in the provision of PHC services.Community nurses do not merely perform nursing activities in the community setting.
Their task should rather be seen as the provision of ongoing, comprehensive and general practice that is not limited to a specific age or diagnostic group aimed at the promotion of health and the prevention of illness (Clark, 1996:18;Lerner & Ross, 1991:47).Community nursing therefore "requires planning and sharing with others in the community to promote health for the community, family and individual.Through the collaborative process, the special abilities of others are used to communicate, plan, solve problems and evaluate services" (Standards for Community Nursing in Wilkey & Gardner, 1999:307).The role of the nurse has thus shifted away from the role of servant to the medical profession towards the role of helper and partner of people and communities.
One particularly vulnerable group of individuals within communities is children with severe disabilities (CSDs).
It is evident that there is a high incidence of disability in South Africa.It is estimated that 5 -12% of South Africans are moderately to severely disabled (NPA, 1999:9).Of South Africa's total population of 40 million, 73% are women and children (Government Gazette no 17910, 1997:11) placing them at a higher risk of disability (Ramey & Ramey, 1992:337).More than 80% of black children with a disability live in extreme poverty and have poor access to appropriate health facilities or early childhood developmental opportunities (NPA, 1999:9).In the sphere of individuals with severe disabilities a particularly neglected group is that of individuals with communication and intellectual impairments due to their inability to articulate their needs, feelings and rights (Thorburn & Marfo, 1990:180).A study conducted in schools for children with cognitive impairment in and around Pretoria indicated that 39% of these children were using less than 15 intelligible words (Bornman & Alant, 1997:17).This percentage is significantly higher than that in comparable international studies such as the 2,4% reported in North Dakota (Burd, Hammes, Bornhoeft & Fisher, 1988:376) and 6% in rural areas in Washington State (Matas, Mathy-Laikko, Beukelman & Legresley, 1985:26).
There are different reasons for this, including the fact that persons with severe disabilities in South Africa are not exposed to Augmentative and Alternative Communication (AAC) strategies, as it is still a relatively new field of expertise in this country.Internationally it is also reported that programmes to specifically address the communication needs by equipping these children with the necessary skills to interact, are limited (Werner, 1987:3-10).
Apart from the high incidence of disability in developing countries, these individuals also share commonalties in terms of the services offered.It is well documented in the literature that people with severe disabilities receive less education and vocational training, and are often unemployed, resulting in poverty (Lundgren-Lindquist & Nordholm, 1993:83).The aura of charity still pervades many of the services offered and rarely are the persons with disabilities given the opportunity to help themselves (McConkey, 1996:28).
Due to long held low expectations of people with severe disabilities, they are often excluded from leadership positions or from any planning and decision-making in their communities, resulting in a lack of representation of their needs.
In addition, very few professionals in South Africa are trained in AAC implementation, and are thus unable to provide AAC intervention to people in need.This is due to the fact that communication intervention for children with severe disabilities (CSDs) has not been a priority, and that international sanctions limited South Africa's participation in the international AAC field until the early nineties.In addition, the majority of services provided by professionals are located in a few large cities, making it inaccessible to the rural population, leading to services being provided to less than three percent of disabled people in need (Thorburn & Marfo, 1990:22).Professionals also tend to work in isolation with minimal integration between services, which led many people to believe that service provision to disabled people was too complicated to be administered by persons other than professionals.It was thought that any other form of rehabilitation would be ineffective (Thorburn & Marfo, 1990:24).
When placing disability within the PHC paradigm, it is clear that the first contact that many CSDs and their primary caregivers have with professionals, is contact with community nurses.This is due to a number of factors, including the relative ease of access to primary health care clinics for South Africans, even those living in rural and remote areas; the fact that primary caregivers attend well-baby clinics and also visit these clinics for inoculations; and the fact that community nurses are often the only health professionals in the area.Furthermore, these nurses often remain the only professionals who provide support and assistance to caregivers of pre-school children.
Little information is, however, available as to community nurse's perceptions regarding CSDs; their exposure to CSDs and how they perceive the needs of CSDs and their primary caregivers.This information is central when planning a training programme for nurses to equip them with the necessary skills and expertise to assist primary caregivers in dealing with their CSDs.
The current research project therefore discusses the issue of nurse's perceptions in dealing with CSDs and their primary caregivers.In order to achieve this a descriptive needs analysis was conducted.

AIMS OF THE STUDY
The main aim of this study was to conduct a needs analysis in order to: ascertain the perceptions of community nurses regarding service delivery to CSDs; determine the exposure of community nurses to CSDs; establish how community nurses perceive the needs of CSDs and their primary caregivers.

RESEARCH DESIGN AND METHO-DOLOGY
A descriptive design was used employing both quantitative and qualitative measures, as it would be appropriate in meeting the aims of the study (Leedy, 2001:191).Quantitative data was obtained by using a short two-page questionnaire that was developed specifically for this purpose.Qualitative data, on the other hand, was obtained by conducting two focus groups with community nurses as they yield information from multiple sources, contain rich contextual data and are also excellent tools for capturing the nature of experiences, individual perspectives and opinions (Brotherson & Goldstein, 1992:336;Krogh & Lindsay, 1999:223;Krueger, 1988:47;Morse, 1996:467).The methodology will be described in terms of the participants, data collection and analysis as well as reliability and validity.

Participants
Community nurses employed by the Moretele Health District, a semi-rural and rural area situated in the North West Province (former Bophuthatswana), participated in this research.This Health District is viewed as a previously deprived area requiring ongoing Government support to uplift it and ensure equality of services.Despite this, the particular area is a good example of close collaboration between the Health District, which provides PHC and the Jubilee Hospital, which provides secondary health care.It is also relatively close to Pretoria where tertiary care, viz.traditional rehabilitation by therapists, is provided.This Health District is made up of a total of 25 clinics and 14 mobile points, which serve an estimated average of 4365 persons per day.
The clinics differ in size, ranging from some with only two nurses serving approximately 30 people daily to some clinics with eight nurses serving 300 people daily.
Participants were either working in clinics or at the various mobile points in the area at the time when the research was conducted and nurses who were not working in a nursing capacity (e.g.only administratively), who were positioned at the Jubilee hospital (providing secondary care), who were between jobs or retired, were excluded.The qualifications of the nurses were not included as a selection criterion, so that it covered a whole range, from nursing assistants to professional nurses.
Background information on the participants in terms of their age, gender, nursing status and experience, is provided in Table 1.

Data collection
In order to obtain the quantitative data, the researcher and fieldworker visited all 25 clinics and 14 mobile points in the particular health district in order to complete the questionnaire.Table 2 provides a summary of the most important areas covered in the questionnaire, with specific reference to the motivation for inclusion.The category, type and number of each question in each category are also discussed.
All the nurses who were present on the day that the researcher visited the particular site (ranging from nursing assistants to professional nurses) were included.
A total of 111 questionnaires were completed.This implies that 92% of the total population was surveyed (111 of 121 nurses employed in the Moretele Health District).
In order to obtain the qualitative data, 21 community nurses from this district who took part in an in-service training programme called "Nurses-in-Training" that meets monthly and receives talks on various nursingrelated topics, were involved.Due to the vast spread out nature of the district and the impracticality of closing clinics so that nurses could participate in the research, it was decided to include all the nurses who attended the first "Nurses-in-Training" programme for 2000 in the focus group.This resulted in two focus groups: one focus group with 10, and the other with 11 participants.Literature suggests groups of 8 -10 participants (Frey & Fontana, 1993:28).As a result of the commonalties that these nurses share and the fact that they mostly knew each other, rapport was quickly es Nurses generally tended to be older (85% in their thirties and forties).This finding is similar to a study conducted in the Eastern Cape that reported that 80% of their sample was aged 30 -40 years (Thipanyana & Mavundla, 1998b: 28).This implies that they are a mature workforce in this particular health district.This also impacts on the teaching principles that should be considered when planning a training programme, as issues related to adult learning styles will have to be adhered to.

Age in years
Percentage By far the majority of participants were female (98%).
This was expected as nursing has traditionally been considered a female occupation.

Percentage
More than half the total number of nurses (59%) had more than ten years experience, highlighting the fact that they tended to be a stable workforce who stayed employed for a long time and therefore had a vast amount of experience.This makes them excellent candidates for additional in-service training, as they will be able to utilise the new knowledge and skills for a long time.The movement between clinics is varied as 27% had spent less than one year in the present clinic but   The degree to which nurses feel comfortable in handling the different disability types might be used as a predictor of how they view their skills and knowledge in this regard.It is assumed that if nurses have the knowledge and skills to deal with a child with a particular disability that they would then feel comfortable in handling this child.
However, a disadvantage of self-evaluation is that it is difficult to be objective and to accept one's own strengths and weaknesses (Bradshaw, 1989:108).tablished, so that the focus group was experienced as non-threatening.Each focus group was facilitated by a speech language therapist (SLT) with a primary interest in the severe disability field.It was aimed at determining nurses' perceptions and their exposure to CSDs as well as encouraging them to respond from their own experience.The researcher acted as one of these facilitators.English was used as the focus group medium as all nurses were conversant and comfortable with it.Both facilitators led the respective focus groups in a semi-structured discussion of three openended questions (Frey & Fontana, 1993:36;Krueger, 1988:60), namely: How often do you see the primary caregivers of CSDs?
Tell us about your experience.
What do you think are the biggest problems these primary caregivers have?
What can we do to help you to help the primary caregivers of CSDs better?
During the discussion the facilitators asked for clarification when some concepts were unclear or in cases where the data were open to misinterpretation (Bryman, 1994:5;Krefting, 1991:219).Nurses were also encouraged to take part actively, to share their wealth of experience, to understand that no comments would be regarded as "stupid" or "silly" and were assured that they would remain anonymous.Flexibility was allowed in terms of the sequence of questions so that facilitators were able to listen to the discussion, to observe and to respond to what they saw and heard.Structural coherence of the topic was thus maintained, increasing credibility (Krefting, 1991:217).In an attempt to enhance trustworthiness member checks were included, which entailed that the facilitators gave a short summary at the end of the discussion of each of the three questions.Participants were then asked whether they agreed, disagreed, or if any important issues raised had been overlooked (Hoffart, 1991:526).The two facilitators spent some time debriefing directly after the focus groups to discuss their interpretations in order to enhance trustworthiness (Peshkin, 1993:24).No areas that needed additional probing or clarification were noted.Debriefing is an important part of investigator triangulation and was included to heighten the credibility of the data obtained (Brotherson & Goldstein, 1992:337;Kimchi, Polivka & Stevenson, 1991:364-365).Verbatim transcriptions of these two focus groups were made.Focus group 1 lasted 58 minutes and Focus group 2 lasted 67 minutes.

Data analysis
For the analysis of the quantitative data descriptive statistics (frequency distribution counts and percentages) were used, implying that all variable values were listed and counted each time they occurred (Babbie & Mouton, 2001:460).In addition, contingency tables were created as they indicate the relationship between sets of nominal data (e.g.determining the relationship between exposure to the different disability types and how comfortable nurses felt in dealing with these children).
The Pearson Chi-square test was then used to determine the significance of this relationship.
Regarding the qualitative data, the researcher delineated themes from each of the two focus groups and came to some tentative conclusions.Transcriptions were then handed to the other focus group facilitator and she was also asked to delineate themes (peer debriefing).Care was taken to avoid "coding fetishism" where coding becomes a mechanical process of labelling involving obsessive and unnecessary details (Webb, 1999:325).Rather, coding was seen as part of the whole analytic process that also involves theoretical perspectives and interpretations.When two re-searchers separately code and then cross-check data, the issue of analytic stability comes to the foreground (Brotherson & Goldstein, 1992:338).In order to address this, both researchers received a set of coding guidelines pertaining to the content and the analytic procedure, e.g. the initial questions that were appropriate as well as the decision rules for determining the categories.Following the development of the themes the two facilitators met to review the theme analysis with a request for verification, correction, clarification and/or elaboration of tentative conclusions drawn from the data analysis.This process is essential in order to ensure the credibility of the data (Krueger, 1988:60).
Apart from obtaining only significant and consistent themes in the data it is also rich in providing illustrative examples.In order to not fragment, decontextualise and/or misinterpret data, it was crucial to go back to the complete text frequently (Webb, 1999:327).

Validity and reliability
Regarding the quantitative data (questionnaire) the following factors were taken into consideration: ended format, so that the participants were not guided in a specific direction, and also to allow them to answer in their own words.
• Likert scales did not include more than five options (so that the options did not become visually overwhelming and so that participants could remember the options (Babbie & Mouton, 2001:153).
• Items were mostly short e.g.Question 8 "How serious are the following problems in your opinion?" and care was taken to ensure that each question dealt with only one concept (Babbie & Mouton, 2001:234).
• Care was taken to avoid any biased or leading questions, jargon and other difficult terminology, and also to ensure the clarity of the questions, so that all the participants understood the same concepts with the vocabulary used (Bynner & Stribley, 1979:141;Mertens, 1998:115).
• An attempt was made to keep the questionnaire as short as possible to ensure that participants did not lose interest and/or become fatigued resulting in the omission of important information (Leedy, 2001:206).
• Meticulous care was taken with the visual appearance of the questionnaire.Questions were all numbered, organised in logical sequence and did not have too many items per page.
• Clear, brief instructions to guide the participants were included at the top of the questionnaire.They were encouraged to complete all questions, as incomplete responses would impact on the reliability of the data (Leedy, 2001:207).
In qualitative research, on the other hand, the terms reliability and validity cannot be used, as the nature of the data is different from that of quantitative data.Instead, a new set of criteria, developed for and fit for qualitative research should be used, one of which is the concept "trustworthiness" (Cutcliffe & McKenna, 1999:375;Kirk & Miller, 1986:23).In the present research attempts were made to increase the trustworthiness of the data through the use of specific techniques, which are displayed in Table 3 (Brotherson & Goldstein, 1992:336-338;Cutcliffe & McKenna, 1999:376-379;Kimchi, Polivka & Stevenson, 1991:364-366;Klopper, 1995:25-28; Krefting,

ETHICAL CONSIDERATIONS
Permission to perform the study was obtained from the relevant authorities.All participants from clinics in the given health district who were able to participate, were included.Data collection was conducted within the current structures for training, i.e. the existing "Nurses in Training" group to minimalise any disruption to the general treatment of patients.All participants were informed of the aims and nature of the research and gave consent that the information could be used.
To protect the identity of the participants no identifying information is provided.

RESULTS AND DISCUSSION
Results revealed the nurses' current exposure to CSDs, their rating of the seriousness of various health condi- In order to further explore the latter aspect, contingency tables were created to correlate the relationship between exposure to the different disability types and how comfortable nurses felt in dealing with these children.
The Pearson Chi-square test was administered to all the categories.Results are shown in Table 5. (Table 5 is on page 45.) From Table 5 it is clear that intellectual impairment and little or no functional speech (LNFS), which implies a severe communication disorder, proved to be statistically significant, and therefore further testing was done.
These results are shown in Table 6.(Table 6 is on page  Peer group examinations and discussions Two independent researchers involved in PhD studies with experience in qualitative research but diverse backgrounds (nursing and speech-language pathology) were involved in order to assist with the exploration of concepts and the analysis of data.This provided the researcher with the means to discuss insights and problems, to "test" ideas regarding certain aspects and also to prevent personal bias.This bias can be attributed not only to the researcher's own culture, background, interest, etc. but could also arise from the prolonged engagement in the particular community.These peer discussions also led to deeper reflexive analysis of the data.The background information of the participants for the focus groups was obtained from a short questionnaire.This was then compared with the available demographic information for the whole group in order to ensure representativeness.It is important to determine whether the data obtained can be seen as typical or atypical of the phenomenon under investigation.This is briefly described in the results section.

Indirect method
Look at internal and external validity measurements The above-mentioned discussion on credibility and transferability is important for this section, as Krefting (1991:221) states that no validity is possible without reliability (and thus no credibility without dependability).A demonstration of the former is sufficient to establish the latter.

Triangulation
This method and its application in the current research has already been discussed in detail.

Stepwise replication
In qualitative research the researcher always aims to provide a "thick" or "rich" description of the context.Rigour was applied in describing the context, how data was obtained, analysed (i.e. the development of themes) and interpreted.The methodology should be explicit enough for an independent researcher to repeat.An independent knowledgeable researcher with experience in the field of qualitative research was asked to evaluate the degree in which the research process, including the raw data, data reduction and analysis products (condensed notes and qualitative summaries), data reconstruction (thematic categories), findings, interpretations and recommendations follow acceptable research practice.This researcher (the "auditor") stood completely neutral to the research.It should be emphasised that neutrality is not seen as a way to avoid "contamination".Rather the researcher's characteristics, attitudes and feelings are recognised as influencing the research and hence made explicit.

Percentage
Weighted frequencies indicate that there were no significant differences in the nurses' level of comfort in dealing with children with different types of disabilities, i.e. they did not feel more uncomfortable with a child with intellectual impairment (II) than with a child with CP.

D is a b ilit y t y p e
Percentage More than half the total number of nurses (59%) had more than ten years experience, highlighting the fact that they tend to be a stable workforce that stayed employed for a long time and because of this had a vast amount of experience.This makes them excellent candidates for additional in-service training, as they will be able to utilise the new knowledge and skills for a long time.The movement between clinics is varied as 27% had spent less than one year in the present clinic but 25% had spent 6 to 10 years and 20% had spent 4 to 5 years at the present clinic.Given the high rate of staff turnover during the past decade, the stability of the nursing workforce in the Moretele Health District is important.port, 1986:15).In addition, the role of community nurses in the rehabilitation of children with intellectual impairments has become more prominent in recent years (Alant, 1998:18).This table also indicates that despite their exposure to children with intellectual impairment all the nurses felt more comfortable than uncomfortable in handling these children.However, the nurses who had never seen children with intellectual impairment were notably the group who felt the most comfortable in handling them (93.7%).This might be due to the fact that they were unaware of the potential problems and issues of dealing with these children.
The second disability category that indicated significance on the Pearson Chi-square test was children with LNFS.Data for this group is shown in Table 7. in handling these children.However, once they were exposed to these children they became more uncomfortable in handling them, implying that even very infrequent The last section of the quantitative data relates to the type of service delivery and the needs of the CSDs as perceived by the nurses.Results are shown in Table 8.Table 8 follows on next page.
From Table 8 it is clear that the services to CSDs and their primary caregivers mostly entail direct referral, irrespective of the disability type.This is an important factor, as it was noted during the focus groups that the level of compliance with referral is low, as the primary caregivers of CSDs often do not have the necessary resources (e.g.financial constraints and transport difficulties).This correlates with observations from a study conducted in the Eastern Cape which also reported on the prominence of transport issues (Thipanyana & Mavundla, 1998a:23).The sustainability of this type of service delivery is therefore questionable indicating the need to train community health by providing appropriate knowledge and skills so that direct service delivery to this population becomes feasible.According to Musholt (1995:307) this type of training should be transdisciplinary in nature so that community nurses can start acting as generalists as they need to draw on many resources to provide quality care.This is confirmed in the nurses' evaluation of what CSDs and their primary caregivers need.Apart from schools (22%), the most pressing issues were trained professionals (14%) and good parental care (14%) that could be achieved through parent training programmes.
Regarding the qualitative data, a summary of the themes delineated from the two independent focus groups is provided in Appendix A. However, nurses acknowledged that in practice followups are not done and that most of the service delivery is based on referral, indicating a disagreement between policy and practice.They spoke spontaneously about the problems they encountered in the workplace, despite the fact that this information was not probed.This included aspects such as feelings of inadequacy due to the fact that they do not know how to handle primary caregivers of CSDs, depression, attitudinal barriers due to limited staff and time constraints and the fact that no follow-ups are done.Regarding their experiences it A wide range of needs was identified.Nurses perceived the need for a school to be the most pressing for CSDs, followed by the need for trained and skilled people to work with these children (14%) and more effective parental care that emphasises love and care through the training of the primary caregivers (14%).The latter two aspects have also been mentioned in the literature as pressing needs for CSDs (Alant, 1998:20).

Percentage
Table 8: Service delivery and needs of CSDs as perceived by nurses was noted that their exposure varied.Although exposure was limited in some instances, the impact was high as most nurses could recall details about the CSDs, even when they had seen them more than a year ago.In addition, it was interesting to note how many CSDs are identified informally (e.g.neighbours inform nurses).When asking nurses what they required to enhance their service delivery it became clear that knowledge (education), skills, a positive attitude and raising community awareness were high priorities.no similar kits exist that can address this need at a primary health care level.

LIMITATIONS OF THE RESEARCH
• English was used as the medium for data collection as all nurses reported that they felt proficient in using it.However, the richness of the data provided may have been enhanced had the study been conducted in the nurses' various mother tongues.
• Limited available research information regarding this particular topic exists for the South African context, and therefore the researcher had to rely on information obtained from other developing countries.

IMPLICATIONS FOR FURTHER RE-SEARCH
The results from both the quantitative and qualitative data have definite implications for service delivery to CSDs and their primary caregivers.Data clearly indicated that nurses felt inadequate about the way in which they handle CSDs and their primary caregivers and that they required more knowledge and skills that would in turn have a positive impact on their attitudes.It was also evident that nurses are well aware of CSDs and their primary caregivers' problems and that they are trusted by primary caregivers regarding discussions of their personal problems.This would make the nurses ideally suited to provide training to primary caregivers of CSDs so that they would be able to stimulate their own children.It was also clear that many primary caregivers in the Moretele Health District have poor parenting skills and that nurses would like to educate them.Furthermore, there are limited resources in the area, making appropriate referrals difficult.This might impact on the poor feedback that nurses receive (primary caregivers probably do not take their children to the referred places due to poverty, transport issues, etc.).This makes it clear that the training of nurses should focus on equipping nurses to train these primary caregivers so that their CSDs can remain in the community and that they do not have to move away.
25% had spent 6 to 10 years and 20% had spent 4 to 5 years in the present clinic.Given the high rate of staff turnover during the past decade, the stability of the nursing workforce in the Moretele Health District is important.
were used for identification purposes and to ensure that all clinics were visited.Gender, birth date, nursing status, years of experience as a nurse and experience in the present setting were used for descriptive purposes as all these factors could im pact on the type of responses provided.This inform ation is im portant for com piling a profile of the nurses as these aspects im pact on knowledge and skills as well as on the type of services they provide.regarding nurse's exposure to the following disability types: intellectual im pairm ent, cerebral palsy (CP), deafness, blindness, LNFS and an open category for "other".Exposure was m easured in term s of frequency, and included the following categories: never, every week, every 2 weeks, every m onth and less than once a m onth.Exposure is an im portant factor as this directly im pacts on perceptions and knowledge about the different disability types (i.e.intellectual im pairm ent, cerebral palsy (CP), deafness, blindness, LNFS and multiple disabilities) categories described in the W hite paper for the transform ation of the health system in South Africa (Government Gazette 17910, 1997:24), as priority areas for children, namely HIV/AIDS, Tuberculosis and chronic diseases, e.g.asthm a, were also included.Nurses were asked whether they regarded these conditions as very serious, serious, average, mild or as no problem in their particular work context.This is a crucial elem ent in determining perceptions, as nurses will have no desire to acquire skills and knowledge in a particular area if they do not regard this area as a serious problem .
to determine the type of service provided to children with disabilities, i.e. direct referral to hospital/therapists; direct referral to schools; give advice or counsel parents and refer; obtain case history, screen and refer or interact with the child and provide guidelines to handle the child without referral.This information is important, as it is known that direct referral is problematic in rural areas (due to limited referral options, poverty and transport problems, little or no feedback to the referring nurse, etc.included to obtain information about the priority areas of service delivery as seen by nurses.It was important to keep this as an open-ended question in order to not miss out any data that the researcher might have overlooked in compiling the questionnaire. been involved in the Moretele Health District for approximately eight years.Before conducting the research, one month was spent observing the clinics in an informal way.This prolonged engagement ensured trust between the researcher and the participants, providing her with the opportunity to become entrenched in the culture and work ethics of the nurses and aided in the removal of certain misconceptions (e.g. the number of CSDs seen by nurses).the given health care district was visited, not only a select few.Disability and the provision of services at PHC level were not only viewed from the nurses' perspective, but information was also obtained from the health care district managers and primary caregivers of children with severe disabilities.Triangulation A number of different triangulation types were used for the purpose of the research.They are as follows: the collection of data on individual levels (questionnaires) and on group level (focus groups).Data collected from one source was used to validate data from the other source.Method triangulation A between-methods triangulation was used as the research employed qualitative data (obtained from the focus groups) as well as quantitative data (obtained from questionnaires).Investigator triangulation Researchers from diverse backgrounds (Nurse, SLP, AAC specialist) with experience in qualitative research were included in the research.This enhanced the quality of data as each researcher brought her own expertise to the research.Analysis triangulation Both qualitative and quantitative approaches were applied in analysing the data.By comparing the results of these two techniques the researcher was able to note similar patterns and thus verify findings.Multiple triangulation Multiple triangulation occurs when more than one type of triangulation is used, intensifying the advantages of the different types of triangulation, further validating the findings and obtaining a more comprehensive and satisfactory sense of the phenomenon.The present research achieved this.
of the most important aspects of ensuring credibility.After themes were developed and the data analysed, results were presented to the participants to ensure the correctness of conclusions.It provided nurses with the opportunity to correct factual mistakes and to volunteer new information, and also provided the researcher with the opportunity to record the nurses' reactions after seeing the data in the new format.Cutcliffe and   McKenna (1999:376)  highlighted the importance of using the actual words of the participants as they recognise their own words and respond better, as it has specific meaning for them.Stakeholder reviewStakeholders were involved throughout the process to assist with reviewing the findings, clarifying points of interpretative or descriptive disagreement, prioritising unresolved issues and collecting information on those issues.not to work in isolation, and had frequent meetings with stakeholders, experts in the nursing and disability fields, government representatives as well as primary caregivers of CSDs throughout the whole research project.Examples include the assistance of nursing experts when the questionnaire was drawn up, discussions with disability and nursing experts in determining applicable questions for the were used to ensure rich descriptive data and to enhance the transferability of the data.Results from the two groups were compared and this was also compared with data obtained from the questionnaire.
from the present research was asked to establish how dependable data presented is, and to determine the accuracy of the data (including analysis and recommendations).
This concern is echoed by the World Health Organisation (WHO), who took the unprecedented step and declared TB a global emergency due to their grave concern about the modern TB epidemic(WHO, 2000:1).This document further states that more than 1.5 million TB cases per year occur in sub-Saharan Africa.This number is rapidly increasing as a result of the lethal HIV-TB combination, each speeding up the other's progress.TB is a leading cause of death among people who are HIV-positive and accounts for 15% of AIDS deaths worldwide (WHO, 2000:2).In Africa, HIV is the most important factor determining the increased incidence of TB the past ten years.Other factors that contribute to the worsening impact of TB include malnourishment, the breakdown of health services in many areas, poverty and the emergence of multi- Five major themes crystallised, namely the nurses' perception of problems experienced by primary caregivers of CSDs, how nurses perceive their role regarding disability and the type of services they currently provide, problems they experience, their own experiences regarding CSDs and, finally, what they need in order to enhance their service delivery.Regarding problems experienced by primary caregivers aspects such as disempowerment (including a lack of knowledge, poor parenting skills, poverty, limited resources, unemployment and illiteracy), external influences (religion, culture and tradition, family and community), emotional problems (ranging from denial to anger) and the impact (e.g. a loss of status in the community) were mentioned.These findings are in accordance with literature which reports that community nurses often lack the necessary information and training to meet the unique health care needs of people with disabilities (Musholt, 1995:303).Nurses perceived their current role mostly as obtaining a casehistory, conducting a physical examination, detecting the problem, conducting health promotion and coordinating community-based rehabilitation (CBR) activities, treatment of minor medical ailments, referral and follow-up.These are also the traditional roles ascribed to nurses in the literature (Thomas, 1999:734).

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m ary of problem s experienced b y p rim ary careg ivers of children w ith disabilities Lack of knowledge § D isability § N orm al developm ent, in particular sexual developm ent w hich results in abuse and rape § M edical issues and problem s § Poor com pliance w ith appointm ents and m edication as w ell as im m unisations that are not up-to-date § "S hop around" resulting in intervention starting very late passive: "don't take action" -no follow-ups are done attitudes of nurses not alw ays conducive to the establishm ent of rapport due to tim e constraints and staff shortages § H ow to access a disability grant § H ow to access services Poor parenting skills § U naware of seriousness / not concerned § Im pact on siblings, e.g.siblings have behaviour problem s such as juvenile delinquenc y § Focus on care, not training and stim ulation § Lack initiative § O verprotect or abandon children § D eprivation § Young m others do not care for their typically developing children (com e to school dirty, hungry, sick, etc.).This phenom enon is even m ore prevalent in C SDs Poverty § T ransport struggle to use public transport to school and clinic som e public transport does not take wheelchairs § C linic attended infrequently (cannot afford) § Lack of own hom es and thus live w ith relatives § M alnourishm ent of pregnant m others and children lim ited and scattered: people unaware of them expensive long waiting lists § W heelchairs (acquiring and repairing) § U ntrained teachers § C hildren stay at hom e w ith no or little stim ulation § N o control of quality of services the community § Hide / dump the child § Rejection by family / in-laws § Family members blame each other § Blame partners (especially in the case of an unwanted pregnancy) § Sexual abuse and sex for money (CSDs) Theme 2: How do nurses perceive their role and what they currently do?although it is difficult to provide disability specific advice.ostly general advice, e.g.regarding nutrition rovide counselling (comfort) and family colds, cuts, fever, gastro enteritis, etc. Referral § Hospital (secondary / tertiary) § Social worker § Therapist § School § Medical specialist § Religious support § Genetic clinic § Hospitals refer back to clinics despite the fact that clinics are often unable to offer any services § Referral line problematic § No feedback after having attended § Often primary caregivers do not attend referred service due to transport problems Services provided Follow-up to monitor § Difficult, due to limited time and manpower Nutrition Hygiene transport problems Difficult, due to limited time and manpower Oftern primary caregivers do not attend referred service due toTheme 3: Problems experienced by nurses (This information was spontaneously provided and not probed for) epressed urses do not feel supported by the secondary and tertiary levels of care ncapable eel that they are not helping primary caregivers of CSDs optimally as therefore have to rush patients through clinics annot refer to school nurses as they too have limited resources and ptions for placing CSDs o follow-ups are done, despite the importance thereof o co-ordination of staff on setting (e.g.school nurses and nurses at the genetic clinic see SDs more often) § Some never see any CSDs § Comment: Although exposure might be limited, the impact is high as most nurses can recall details of clients even if they had not been seen for more than a year.§ Comment: Nurses are keen to know more about disability because they acknowledge the fact that although they do not frequently see CSDs at the clinics; they know that CSDs are out there in the community.Knowledge Disability types ntellectual impairment § Cerebral palsy (CP) § Sensory deficits (deaf or blind) § Epilepsy § Hydrocephalic § Micro-cephalic § Physical appearance, e.g.strange or small for age § Neglect, e.g.blind after running into a fence § Abuse and sexual abuse § At-risk factors, e.g.multiple pregnancies, low birth weight Skills Identification evelopmental milestones (children younger than 2 years) § Through schools (e.g.slow learner, repeated Grade 1 three times) § Neighbours inform nurse who then does home-visit § Detect at birth § If missed at birth, detect at baby clinic § Go to traditional healers before clinics / hospitals § Come to clinics when applying for a disability grant Some never see any CSDs Comment: Although exposure might be limited, the impact is high as most nurses can recall details of clients even if they had not been seen for more than a year.Own acceptance of CSDs before teaching primary caregivers to accept § Love CSDs: "Have a big heart" § Interest § Not irritable § Feel supported and "cared for" § Moral and spirit of nurses should be pepped up § Empathy (not sympathy) § Address and change parental attitudes § Focus on abilities and skills § Focus on a person, not on a disability § Peers -children do not have prejudices, adults instil them § Motivated to help CSDs and their primary caregivers Community awareness campaign § Drama / demonstration about severe disability § Remove stigmatisation through education § Empower community to supply own services Community awareness campaign Drama / demonstration about severe disability Remove stigmatisation through education Empower community to supply own services Motivated to help CSDs and their primary caregivers Morale and spirit of nurses should be pepped up

Table 7 : Frequency of exposure to children with LNFS vs. comfortableness in handling them
High stress levels § "Give up" -despondent § Fear: don't know what to do / community reaction § Shock § Shame § Expectations for "typically developing child" is shattered § "Breaks you" § Worry § Anger (with God and with self)