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Chapter 4: Health Visitor and Parent Views on a New Community-based Service
This chapter summarises the experiences of the Health Visitors in administering the assessment and the views of some of the parents who were asked to participate in the study.
Health Visitor Questionnaire
In May 2004 it was decided to assess the views of Health Visitors with a simple eight question, qualitative, questionnaire. All the responses were in free text form. 50 questionnaires were sent to the named health visitors of the recruited infants. 31 were returned completed.
Most of the health visitors appreciated the structured assessment protocol, the extra knowledge, and the confidence gained from using the new form. The extra knowledge included an awareness of the special care needed for these infants and the impact on the parents. They felt that the study helped them establish more open communication with parents and they also valued the prompt reviews by the Consultant Paediatrician in the hospital follow up clinic and the support offered by the Study Nurse. Some were concerned about the extra time needed for the assessments but most felt this was outweighed by the benefits.
The majority of responders said they would miss the support of the study team and the shared specialist knowledge. Some of them expressed concerns about the potential loss of the good relationships with the families and the close monitoring that was achieved through using the new assessment method.
19 of the health visitors said there had been no negative effects in their professional relationship with the parents. As the study progressed there was some uncertainty about the diagnosis of NAS in three families but this did not lead to withdrawal from the study. All the other responses supported the benefits of the new assessment, enabling them to understand and communicate the full extent of the problem.
The Study Nurse was an essential part of the study. Only 10 of the health visitors gave no response when asked if they had used the Study Nurse as a resource. The majority of the others had contacted the Study Nurse for general advice, to check that they were using the assessment tools correctly, and to obtain more knowledge about NAS which was provided.
For the project to succeed, the assessment tools needed to be acceptable to Health Visitors. When asked about the community NAS score, typical comments were 'comprehensive'; 'satisfactory'; 'easy to use'; 'good assessment tool'; 'fine'. Several health visitors drew attention to the benefit of the tool for parents in increasing their knowledge of NAS.
The comments on the Vision Screen were more mixed with some suggesting more training needed. When asked if they had any ideas for working with this group in the future, 17 offered no suggestions. The rest asked for the new assessment to continue, citing its benefits in terms of their improved knowledge and skills when working with the families. Mention was made of ensuring more inclusion of GPs and there were requests for additional training in the recognition, management and child protection issues of infants who have either withdrawn or are continuing to withdraw from heroin and/or methadone.
Influences on Recruitment to the Study
- These parents influenced each other in many areas of contact with professionals, including in recruitment and participation in the study.
- Influence of Study Nurse: At approximately the midpoint of the study, there was a change of Study Nurse. Both were experienced health visitors and brought different expertise to the study.
Confidentiality
Initial engagement with substance misusing parents is essential to service provision and research. There were problems in securing confidentiality in the neonatal unit as other family members were often present, and they were not always aware of the mother's substance misusing status. Other parents could be present nearby in the unit and a private room was not always available. With time, the Study Nurse was "known" by a wide group of substance misusing parents and was quickly identified by parents in the neonatal unit.
Liaison with parents
Timing a visit to the neonatal unit was not easy, and several attempts were often necessary before the Study Nurse succeeded in speaking to the parents. Problems in liaising with parents arose because parents had unpredictable visiting patterns either arriving late at night, not at all or for only short periods. If parents were obviously under the influence of drugs consent to participate in the study was invalid.
Parental feedback
Ethical Committee approval to ask parents the reasons for refusing to participate in the study was not available. Where parents volunteered their reasons, this information was recorded. In some cases, parents expressed disinterest; there were some direct refusals, and on occasions parents changed their minds. Some parents said they wanted to forget that their baby had NAS, other parents denied this diagnosis, or claimed to have stopped using drugs prior to the pregnancy.
On the grounds of confidentiality we were also not allowed to contact parents at the end of the study to find out their longer term views of the care they received. However some parents volunteered their reasons for participating in research. Some expressed an interest in helping improve services. Others recognised the benefits of the new service to their infant (extra assessments, follow-up) and expressed guilt at causing their infant's problems. Some parents were undergoing parenting assessments by Social Work, and stated they 'needed to be seen to be working with health professionals'.
As each case was closed, the parents were sent a thank you letter; verbal reports indicate that this was greatly appreciated. Many parents wished to know the outcome of the study suggesting they felt some ownership of the project. The Study Nurse was perceived as being independent of the main health systems and therefore non judgemental.
Summary
- Of the 31 health visitors who offered their opinions on the community assessment, most felt if provided them with an increased awareness of NAS which they valued;
- Most were less sure about the vision screen test and felt they needed more training;
- The health visitors felt supported by the Study Nurse and were unsure how the loss of this role would impact on their work in this area;
- In general, those parents who volunteered to participate in the research were very appreciative of the improved service.
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