Patient focus groups about nurse-led shared care for the chronically ill

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Abstract

Traditional care offered to chronically ill people does not succeed in bridging the gap between primary and secondary care in a way that suits chronic patients’ needs. So-called nurse-led shared care may offer a solution, in which a specialised nurse practitioner plays a co-ordinating role at patient level. In this article two nurse-led shared care models for patients with diabetes mellitus type 2 and chronic obstructive pulmonary disease (COPD) are looked upon through the patient’s eye. Joint focus groups are conducted in which patients judge the models according to their experiences and indicate the importance they attribute to quality issues. Most of them experience the shared care models as positive and prefer them compared to traditional care. The main quality aspect concerns the provision of information, although its performance needs improvement. The outcome indicates that the qualitative method of patient focus groups should become standard procedure in evaluating the shared care, supported by quantitative means.

Introduction

Focus groups have appeared to be an interesting and worthwhile feedback instrument in nursing research studies [1], [2], [3], [4]. Such groups offer the possibility to explore a phenomenon of interest by blending the elements of the group process theory and qualitative research [1]. In our study, the quality of care delivery within the field of chronic care is the issue, especially the extent of patient satisfaction with the so-called nurse-led shared care. We consider this issue important, since this kind of care may solve the short-comings in tailor-made care for the chronically ill [5], [6], [7], [8]. Particularly chronic ill patients will suffer from the lack of co-operation between primary and secondary care, because they are often episodic in need of both care sectors simultaneously or in succession. Repeatedly, co-ordination appears to fail in case of transfer vice versa. Consequently, continuity of care is missing. Another shortcoming to be dealt with implies insufficient knowledge in primary care about the long-standing treatment chronic illnesses require. Shared care offers care delivery in which generalists and specialists work together on the basis of agreements about co-operation, responsibilities and management and in which the care is focused at the patients’ needs [7], [9]. By making shared care nurse-led, a specialised nurse practitioner is launched as key figure, who puts emphasis on the issue of substitution of tasks between caregivers, i.e. horizontal substitution (transfer of care from hospital to primary care), and downward substitution (transition of care from a higher to a lower qualified provider, mainly from doctor to nurse) [10]. This new concept of shared care implies drastic changes in traditional care. Patients need to be involved in the inherent change processes and the designing of the content of the concept. However, this involvement is utmost difficult [7]. Until now, researchers especially looked for the effects of nurse-led shared care arrangements on the quality of care by focusing at patient outcomes based on the quantitative research techniques that yield individual responses [11]. Patients have been insufficiently offered the opportunity to take part in group conversations about the quality of care, despite the qualification of focus groups as an effective way to learn from perceptions, beliefs, attitudes and experiences [1], [4], [12]. This is especially true when the topic is complex, diverse factors play a role and insight in the underlying factors is necessary [13], like in our study. However, focus groups can generate cumbersome and complex data [14]. To facilitate the collection of data and the data analyses we applied the elements of quantitative methods as an additional means.

We conducted patient focus groups about the quality of care offered by two nurse-led shared care models that are carried out in the Dutch region of Maastricht on the behalf of the patients with diabetes mellitus type 2 and chronic obstructive pulmonary disease (COPD), who have been assessed as medically stable at the outpatient clinic [15], [16]. These models aim to improve the quality of care by giving the four nurse practitioners responsibility for the usual outpatient care of the medical specialist in the office of the general practitioner (GP) during one’s own quarterly patient consultancy hours, in addition to their traditional task of patient education. The nurses’ tasks also entail organisation and co-ordination of care apart from giving advice and instruction to other care providers. The care delivery by all the caregivers involved is formulated in a protocol per chronic disease. The nurse practitioner acts as the central person for the participating patients to turn to. The latter are transferred from the outpatient clinic to primary care, but can still visit the medical specialist at the outpatient clinic once a year [15], [16]. Bearing this in mind, we will answer the following research questions: How do patients judge nurse-led shared care? What quality issues are given priority by them? What lessons can be drawn for the improvement of this care and the qualitative method of focus groups?

Section snippets

Methods

In 1999, three focus groups interviews [17], [18], [19] were conducted with patients chosen at random from the total group of patients participating in the two shared care models by a researcher. Then, the knowledge of the nurse practitioner was required to judge the patient’s ability to join the focus group. The inclusion criteria entailed: the patient is physically able to attend the focus group and is in an overall sufficient physical and mental condition to join the focus group. In case a

Participants

A total of 26 patients (mean age 67.5 years; range 52–81 years) took part in the focus groups, i.e. the first group consisted of four diabetic and three COPD patients, the second of four diabetic and four COPD patients and the third of six diabetic and five COPD patients. All the groups encompassed both men and women, in total 12 and 14, respectively. None of the participants previously joined a focus group. In total, 81 patients were selected at random, two were not judged eligible by the

The patient perspective

The invitation to participate in a patient focus group turned out to be rather unfamiliar to the patients selected. Two-third of the group of eligible persons did not give their consent or withdrew although they were asked personally. This was particularly due to their health impairments. In respect to chronically ill patients, this circumstance should be dealt with more elaborately in the future to avoid substantial dropout. For instance, facilities for transportation and accompaniments as

Conclusion

The conducted focus groups joined by patients with diabetes mellitus type 2 and patients with COPD made clear that chronically ill patients largely prefer nurse-led shared care to traditional care. The most important quality aspect appears to be the provision of information. Yet, its performance by caregivers, in particular the nurse practitioner, still needs enrichment from the patients’ perspective. For future use, the chosen tryout to further structure focus groups seems promising.

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