Nurse-led family-based approach in primary health care for patients with type 2 diabetes mellitus: a qualitative study

ABSTRACT

Purpose

The prevalence of Type 2 diabetes is rapidly increasing, with 537 million people estimated to have diabetes in 2021. The literature suggests that nurses can deliver effective person-centred diabetes care and that families can be essential in supporting patients. Thus, a Nurse-led Family-based (NLFB) approach may be particularly effective. This study aims to explore the perceptions of nurses, adults with type 2 diabetes, and family members regarding the NLFB intervention.

Methods

Guided by the UK Medical Research Council Framework, this seminal study adopted a qualitative, descriptive approach with content analysis. Data were obtained through 16 semi-structured, in-depth interviews. Themes emerged based on an inductive process using constant comparison (Graneheim and Lundman 2004). The COREQ checklist was used in ensuring rigour.

Results

Three main themes emerged includes: (1) nurses’ experiences with current diabetes care practices, (2) stakeholders’ views on the development of a NLFB approach, and (3) merging the nurse-led family aspects into the diabetes care. The key challenges are the dominant medical model, lack of specialist nurses, and time. The key facilitators are knowledge and social support.

Conclusion

The study recommends stakeholders embrace nursing empowerment strategies and involve families to enhance the nurses’ advanced roles and family inclusion in healthcare.

KEYWORDS:

• Nurse-led
• family
• type 2 diabetes
• qualitative
• cross-cultures
• SDG

Introduction

The prevalence of Type 2 Diabetes Mellitus (T2DM) is steadily increasing globally, with 537 million people of adults aged 20–79 years estimated to have diabetes in 2021 (International Diabetes Federation, 2021). The MENA region has the highest proportion of adults living with diabetes (73 million) and highest percentage (24.5%) of diabetes-related deaths in people of working age, with a totalled diabetes-related expenditure of USD 33 billion in 2021. Particularly, 16.3% of adults are living with diabetes in Bahrain in 2021. Such trends severely affect the healthcare industry (International Diabetes Federation, 2021).

As the burden of diabetes continues to rise worldwide, the role of nurses becomes increasingly important diabetes management (Dossey et al., 2019). In recognition of nurses’ leading position, the World Health organization and the International Diabetes Federation (IDF), emphasized nurses’ crucial role in supporting healthcare system (World Health Organization, 2020), particularly diabetes care (International Diabetes Federation, 2021). Many of the nurse-led Randomized Controlled Trials (RCTs) demonstrated improvement with glycaemic control (Chen et al., 2015; Daly et al., 2017; Edelman et al., 2015; Price et al., 2011). A systematic review and meta-analysis of 42 RCTs with 9,955 patients (Daly et al., 2017) reported a small but significant effect of nurse-led intervention on HbA1c (p ˂ 0.0001). An RCT evaluating the effect of nurse-led care in T2DM showed a significantly decreased HbA1c (Jutterstrom et al., 2016). Given nurses’ critical role in diabetes care in Bahrain, nurse-led patient-centred interventions may be for improving patient outcomes.

With the shift in consciousness, nursing practice advocates effective contributions to the Sustainable Development Goals (SDG) (Rosa et al., 2021). Nurses take key actions to plan care for patients, families, and the communities. Thus, “ensure healthy lives and promote well-being for all at all ages” [SDG 3] (Dossey et al., 2019). In the context of Middle East nursing services, it is essential to note that nursing is a primary human resource in Bahrain. In Bahrain, nurses provide diabetes care through Central Diabetes Clinics (CDC) in all health centres (Ministry of Health, 2020). The current model of diabetes care is the multidisciplinary team, where the nurses provide various services and education based on the National Guidelines to T2DM patients (National Guidelines Working Group, 2014). Still, there is no published work on the diabetes nursing evidence-based practice.

Diabetes management can be relatively complex for patients with diabetes and their families (American Diabetes Association, 2017). Unlike usual care, Family approaches support family members in caring for patients by addressing the relational needs (Armour et al., 2005; Fisher & Weihs, 2000). The existing literature indicates that active family involvement could improve social support in adults with T2DM (Baig et al., 2015; Rosland et al., 2012; Subrata et al., 2020; Torenholt et al., 2014), thus, facilitate the maintenance of diabetes self-management skills (Baig et al., 2015; de Wit et al., 2020; Torenholt et al., 2014). However, the concept of a family-led intervention has been underutilized in diabetes within the Arabic family structure.

The international literature suggests that nurses espouse effective person-centred care (Daly et al., 2017; Jutterstrom et al., 2016), and that families can play an essential role in patients’ support (de Wit et al., 2020). A NLFB intervention is an intervention in which the nurse is responsible for the overall coordination, management, and continuity of care (Albarran, 2005). Family involvement includes supporting patients in self-management (Baig et al., 2015), given that the nurses’ role still operates within medical parameters (Albarran, 2005; Daly et al., 2017). As with nurse-led interventions, there is a paucity of research on the role of the family in chronic disease management. An NLFB intervention is an important area to study in Bahrain, given the limited research, and relationship between the nursing workforce and family connectedness, where the culture encourages a family approach (Lovering, 2014).

Importantly, before developing an NLFB intervention to support self-management in diabetes, it is necessary to explore key stakeholders’ perceptions and potential barriers to implementation. The Medical Research Council (MRC) framework guidance on developing and evaluating complex interventions emphasizes that the best practice is to develop interventions systematically (Craig et al., 2019). Such finding suggests that using the MRC to synthesize the available evidence from the qualitative study is essential. The MRC could help explore the NLFB intervention, thus, future designing and evaluating the intervention carefully. The purpose of the qualitative study was to describe the perspectives of nurses, patients with diabetes, and family members about an NLFB intervention for adults with T2DM. The specific objectives include (a) to identify existing T2DM interventions in the diabetes clinics, (b) to inform intervention development in terms of outcome; determinants; target group; venue; retention; and follow up, (c) to explore barriers and facilitators to the NLFB intervention; (d) to identify how the NLFB intervention can be integrated within existing interventions.

Materials and methods

Design

The study employed a qualitative descriptive design to gain better insights from informants regarding a limited understood phenomenon, such as the NLFB intervention in Bahrain. In line with the MRC framework, the qualitative study lies within the first MRC stage (development) to identify the evidence—based from the local context of Bahrain (Craig et al., 2019). Qualitative description is suitable when a straight explanation of a phenomenon is desired, or information is sought to develop and refine questionnaires or interventions (Kim et al., 2017). In the context of the NLFB study, the rationale behind the qualitative descriptive approach is to understand nurses, patients, and families’ perceptions of the barriers to and the benefits of the NLFB approach.

Setting and participants

The study site included three Central Diabetes Clinics (CDC) out of 22 (≈15%) obtained from simple random samples and located in PHC of Bahrain. Data collection took place from December 2019 to July 2020 in the CDC and included random samples of adults as per the routine appointment schedule. The sample included representatives of adults ≥18 years old to facilitate obtaining free consent. The study targeted nurses working in the CDC, patients attending the clinic, and their family members who agreed to participate. The inclusion criteria were nurses involved in planning or delivering health care in the CDC with ≥1 year experience and who spoke English and Arabic. Patients diagnosed with T2DM ≥1 year; ≥18 years; spoke Arabic and/or English; had a family member willing to participate. A family member of patients with T2DM, a blood relative, or a spouse who was ≥18 years. The exclusion criteria included healthcare professionals other than nurses, nurses not working in the CDC, or nurses with <1 year of experience. Patients’ exclusion criteria included any forms of diabetes other than T2DM, persons with significant diabetic complications, disabilities, or mental health problems that limit the ability to participate and pregnant women. Family members’ exclusion criteria included persons <18 years, have mental health problems or disabilities that limit their participation or are unable to provide free consent.

The sample size was informed by both data saturation (Eatough & Smith, 2017) and sufficient information power based on “inductive thematic saturation” (Malterud et al., 2016). The study sample size met the criteria of the dynamic interaction of the principles of the “Information power” model (i.e., aim; specificity; use of theory; quality of the dialogue; analysis strategy; and data analysis approach (Malterud et al., 2016). The purpose was narrow with an adequate qualitative content analysis approach, and the purposive sample contained participants with diverse specificity. Using purposive sampling, six nurses agreed to participate, and from the 55 invited patients, five patients with five family members decided to participate in the study. The main reasons for non-participation were non-willingness, lack of time, family responsibilities, or not having a family member willing to participate. The study observed no barriers in conducting interviews among women. Accordingly, the present study included a non-probability purposive sample of 16 (6 Nurses Participants, coded NP—NP6, five Patients Participants, coded PP1-PP5, and five Family Participants, coded FP1-FP5).

Non-probability purposive sampling ensured adequate data saturation, with sufficient information power. The study continuously assessed data saturation and information power, incorporating every second transcript during data collection (Malterud et al., 2016; Saunders et al., 2018). Data collection was complete when no new concepts or themes emerged based on an “inductive thematic saturation”. Therefore, the number of participants provided sufficient cases for the development of meaningful data as the central account of the descriptive approach is the description of the perceptions/or experience, such as the NLFB intervention (Eatough & Smith, 2017).

Data collection

The Royal College of Surgeons in Ireland Research Ethics Committee approved the study. The nursing coordinator acted as a gatekeeper. The coordinator randomly recruited the patients’ participants attending the clinic using the routine appointment schedule, briefed them about the study, provided them with a Participant Information Leaflet, and advised them to nominate a family member. Nurses, participants, and family members signed informed consent upon agreeing to participate voluntarily. With purposive sampling, nurses attended their interviews as per a time schedule agreed with the gatekeeper. The gatekeeper invited patients and some family members on the same day of patients’ routine appointment for an interview, and invited family members who did not attend on the same patient’s appointment date to come on a different appropriate date. As this qualitative study is a part of a PhD research, the first author conducted the individual face-to-face, in-depth, semi-structured interviews. The interviews occur in private rooms in the diabetes clinics. In qualitative descriptive research, interviews are the most prominent data collection strategies. Compared with focus groups, the flexibility of the interviews makes the interviews a superior technique for the exploration of areas where there is limited data, such as the NLFB approach (Eatough & Smith, 2017). In depth interview are particularly significant and appropriate for discovering the who, what, and where of events or experiences (Kim et al., 2017). In line with the qualitative research methodology (Creswell & Creswell, 2017), the interview guide was developed based on the literature findings concerning nurse-led and/or family intervention, taking into account the present qualitative research hypothesis. The interview guide consisted of three parts. The study used the same questionnaire for all participants, but adapted a simplified version for patients and families, taking into consideration the diversity of participants. Accordingly, the nurses’ interview guide was adapted by tailoring and simplifying the questions to match patients’ and families’ needs and literacy levels. Therefore, different participants answered different versions of the same questionnaire. Interview guides are used to ensure in-depth discussion, consistent, valid, and reliable data (Creswell & Creswell, 2017). Throughout the interviews, the nurses answered parts 1–3, concerning the existing interventions for T2DM available in Bahrain and how an NLFB intervention could be integrated within the Primary Health Care (PHC) (Table I), while the patients and families answered only part 2. Part 2 was concerned with intervention execution (Table II). Data collection includes 16 interviews that took place from December 2019 to July 2020. The interview duration ranged from 35 to 60 minutes, with interviews audio-recorded in the CDC of PHC. None of the interviews was rejected or repeated.

Table I. Interview guide of nurses.

Objective		Questions
Part 1:
(a) To identify existing T2DM interventions in the diabetes clinics, interventions.		How would you describe existing interventions for patients with T2DM in diabetes clinics of Primary Health Care (PHC)?
Part 2:
(b) To inform intervention development in terms of outcome; determinants; target group; venue; retention; and follow up	Outcome	What do you think are the main diabetes management goals for patients with T2DM?
	Determinants	What are the things that need to be addressed to improve diabetes management outcomes among patients with T2DM?
	Target group	Which group of patients with T2DM would most likely benefit from nurse—led family intervention?
	Venue	Where is the most appropriate place to deliver an intervention for T2DM patients and their families?
	Follow up	What do you think is the best way to follow up the patients with T2DM who receives the nurse-led family intervention?
(c) To explore barriers and facilitators to the NLFB intervention;	Facilitators	How do you think the nurse can involve a family member in delivering an intervention for patients with T2DM?
	Barriers	What factors would prevent patients with T2DM and their families to attend nurse-led intervention?
Part 3:
(d) To identify how the NLFB intervention can be integrated within existing.		How do think a nurse-led family intervention can be integrated within current T2DM management in diabetes clinics of PHC?
Is there anything else that you would like us to know?

Table II. Adapted interview guide of patients and family.

Part 2:
Outcomes	What are the most important goals for you in terms of diabetes management?
Determinants	If you were to take part in an intervention to help you self-manage your diabetes, what are things that you would want the intervention to focus on?
Target group	What types of patients do you think the intervention should be offered to?
Venue	Where is the most appropriate place to deliver an intervention for patients with T2DM and their families?
Follow up	What do you think is the best way to follow up the patients with T2DM who receives the nurse-led intervention?
Facilitators	How do you think the nurse can involve a family member in delivering an intervention for patients with poorly controlled T2DM?
Barriers	What factors would prevent patients with T2DM and their families to attend nurse-led intervention?

Data analysis

The data analysis was informed by the qualitative content analysis strategies described by Graneheim and Lundman (2004), using manual coding that provided clear and insightful guidance (Creswell & Creswell, 2017; Graneheim & Lundman, 2004). The steps included identifying, labelling meaning units, and sorting codes into categories to formulate themes (Graneheim & Lundman, 2004). The first author transcribed all the recordings. After a thorough reading, the first and second authors combined the transcripts into one text, allocated meaning units and codes, compared the codes for similarities and differences, and then created themes based on an inductive process using constant comparison (Graneheim & Lundman, 2004). The first and second authors independently reviewed the coding assignment of the data and commented on the appropriateness of the coding categories and emerging themes. Differences were resolved through discussion and consensus. The study achieved data saturation based on “inductive thematic saturation” that focuses on reporting the findings in a descriptive, comprehensive language of the participants’ perceptions of the NLFB intervention (Saunders et al., 2018). Inductive thematic saturation approach was selected for its design features of identifying new themes that depends on the number of those themes rather than the completeness of existing theoretical categories (Malterud et al., 2016; Saunders et al., 2018). Particularly, the constant comparison using an inductive process ensured that the emerged themes was comprehensive, with no missing data (Graneheim & Lundman, 2004)

Rigour

The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (supplementary material) was used to ensure standardized reporting, and rigour (Tong et al., 2007) incorporating credibility, confirmability, and authenticity measures (Fade, 2003; Mays & Pope, 2000; Whittemore et al., 2001). The study authors assessed interview questions’ face and content validity using peer review based on their research and content expertise (Kimberlin & Winterstein, 2008). Two patients with T2DM and two family members not involved in the study participated in piloting the questions. In addition, the guide was translated and back-translated English—Arabic, Arabic—English to ensure simplicity, clarity of language, and validity of the question guide (Al-Amer et al., 2016). Minor amendments were applied based on feedback. Rigour measures including credibility, confirmability, and authenticity were employed to ensure trustworthiness (Fade, 2003; Mays & Pope, 2000; Whittemore et al., 2001).

Credibility was maintained via cross-checking research, and peer debriefing in reflexivity sessions between the primary author and co-authors to make it more credible. Saturation was achieved through ongoing data collection until the study reached a point where no new information are being revealed (Adler, 2022). All raw data, transcripts, recorded files, and analysis notes were used for confirmability of the results. Data confirmability was fulfilled through independent reviews and consensus of the coding scheme by the research team. For instance, triangulation via cross-checking transcription, coding assignment provided feedback about the analysis and the results, ensured accuracy of the findings. Despite the limited sample related to transferability, the thick description of the emerging themes can be used in designing a nurse-led and/or family-based programme in Bahrain and similar context, such as the GCC. The authenticity of the findings was verified by relevant participants and supported with participants’ quotes from the transcripts. Dependability was ensured through rigorous data collection techniques and procedures, data analysis that are well documented in the present study (Adler, 2022), in terms of independent reviews and consensus of the coding scheme by the research team.

Results

Demographic characteristics of the participants

Sixteen participants attended one-to-one interviews held at the CDC. The demographic characteristics of the participants are outlined in Table III. Participants were young and middle—age adults between 18–64 years old. All nurses were female, as all diabetes nurses working in the diabetes clinics of Bahrain are females. Similarly, all family members were female as all patients nominated their family members. Patient participants included a mix of males and females.

Table III. Participants characteristics.

Participant	Age	Gender	Level of education	Years of diabetes	Medication	A1c mmol/L	Range	Mean
NP1	48	F	Bachelor	NA	NA	NA	37–50	43
NP2	38	F	Diploma
NP3	46	F	Diploma
NP4	37	F	Bachelor
NP5	50	F	Diploma
NP6	38	F	Diploma
FP1	18	F	Secondary	NA	NA	NA	18–58	40
FP2	58	F	Secondary
FP3	58	F	Bachelor
FP4	34	F	Masters
FP5	32	F	Professor
PP1	60	M	Secondary	17	Oral + insulin	78	43–64	54
PP2	64	M	Secondary	28	Oral	62
PP3	43	F	Bachelor	9	Oral	45
PP4	58	M	Diploma	5	Oral + insulin	68
PP5	44	F	Bachelor	10	Oral	47

FP: Family participant, NP: Nurse participant, PP: Patient participant.

Themes

Using Qualitative inductive content analysis adopted from Graneheim and Lundman 2004), three main themes emerged from the analysis of 16 interviews (1): nurses’ experiences with current diabetes care practices (2), stakeholders’ views on the development of a nurse-led family approach, and (3) merging the nurse-led family aspects into the current diabetes care. The emerged themes from the qualitative data analysis generated a new concept for the development of an NLFB interventions (Figure 1) based on the convergence and divergence of stakeholders’ perceived roles (Theme 1), views on the NLFB intervention (Theme 2), and the prospective integration of a nurse led and or family-based aspects within an appropriate cultural context (Theme 3). The concept espouses nurses, patients, and families act and interact within a dynamic process that create a solid foundation for the intervention. The NLFB framework (Figure 1) emphasize the collaborative relationship between the decision makers and care takers that can potentially improve health and well-being.

Figure 1. Emerged themes from qualitative data analysis.

Theme 1: nurses’ experiences with current diabetes care practices

The emerging findings clarified how nurses conceptualize their current experience within the CDC clinic. In particular, the role of the nurse within the multidisciplinary team and the need for nursing role development. Two main subthemes emerged from the data—multidisciplinary team best practice and the significant nursing role within the interdisciplinary team.

Best practice in a multidisciplinary approach

The findings strongly supported the concept of a multidisciplinary approach to providing diabetes education. The perspective of the nurse participants described the demands of patient routine care in accomplishing daily diabetes care within the CDC and the requirements for teamwork, cooperation, positive relationships, and group efforts. Overall, nurses recognized the importance of the multidisciplinary team approach and perceived the multidisciplinary team approach as the gold standard for providing diabetes care. All the participants consistently reported diabetes education as a principal intervention from health services.

NP2:

”Team, always it is a team. We are a team here. We cannot say it is personal work, no. We are a team working together for the patient”.

The above quotes illustrate how nurses valued the partnership with the different departments.

The multidisciplinary team delegated the task of providing diabetes team education on different topics, such as diet, dental, and sexual health. However, the participants believed that diabetes education should involve doctors and nurses, not only nurses.

NP4:

”Multidisciplinary team education involves diet, exercise, and foot care.‘ NP5:’ If he has a sexual problem, the patient must see a doctor, Dental check, yearly.” PP5:“Involving doctors with nurses is essential”. Such alliance was perceived as significant to nurses.

The multidisciplinary team, as well as routine patient care, involved health and physical assessment as required. The findings showed that physicians and nurses assess diabetes outcomes. Assessment is done via laboratory tests (e.g., A1C, Blood glucose (BG), etc.) and physical check-ups (i.e., Blood Pressure (BP), Body Mass Index (BMI), etc. Nursing participants regarded A1C/BG level as a key outcome of diabetes.

NP1:

“They mainly focus on the fasting blood sugar and HbA1c”. Only one participant described adherence to self-care as a primary outcome. NP1:” Our goal is to follow up with every patient individually and try our best to improve the patient’s compliance.”

The significant role of nurses within the multidisciplinary team

Compared to the nurse-led approach, all the nurses explained that the multidisciplinary team was the best practice in diabetes interventions and follow-up. Although a multidisciplinary approach was reported as the preferred means of diabetes education, the nurse participants perceived a heavier reliance on them than other team members. Majority of the nurses favoured the multidisciplinary team over the nurse-led approach.

Nurses saw themselves playing a central role within the multidisciplinary team. Nurses reported that they provided one-to-one education at the time of diagnosis, on an ongoing basis, with routine assessment, upon request, and on special occasions, for example, during Ramadan, Hajj.

NP3:

”We are offering education any time patients have questions.‘ NP5:’ We offer group health education workshops for the patients every four months.”

Clearly, nurse participants understood that the diabetic patient has unique needs that require to be addressed at an individual level. However, the multidisciplinary team only provides structured, group educational workshops every four months.

Theme 2: stakeholders views on the development of a nurse-led family approach

Stakeholders’ views were conceptualized by the following themes: the importance of glycaemic control, the three-dimensional connection among stakeholders, and the operational aspects of the nurse-led family approach. They provided the foundation for designing an NLFB intervention.

The importance of glycaemic control

Nurses, patients, and families assertively expressed the expected outcome of a patient-centred education as glycaemic control. Some nurses and patients mentioned “compliance,” “general health,” and psychological well-being as secondary outcomes.

NP6:

”To help the poorly controlled diabetes patients maintain the sugar level. This outcome is the primary goal.‘ PP3:’ The vital part is reducing blood glucose and HbA1c.”

Participants expressed various psychosocial determinants when they were asked about the things that need to be addressed to improve diabetes outcomes. Nurses, patients, and families reported that knowledge and social support were vital to improving health outcomes. A tailored individualized education approach for each patient’s unique needs will likely have the most significant impact. Participants identified related determinants to successful education: motivation, self-efficacy, willingness, psychological support, acceptance, and follow-up.

NP2:

”Educate them, guide them, support them.‘ FP3:’ They must have [patients] social support, whether their husband, mother or any other people.‘ NP3:’ Give them knowledge. Most patients didn’t know.”

The three-dimensional connection among stakeholders

Study participants perceive the significant players within an NLFB approach as nurses, patients, and families. Those players may be constructed as a three-dimensional connection of interventionist and recipients’ relationship within the NLFB intervention. Most participants indicated that patients with diabetes would benefit from a nurse-led or family intervention. Several participants reported that such an approach is more relevant for patients with poorly controlled diabetes. The person most consistently reported to assist with family diabetes intervention was a blood relative or a spouse. All patients and nurses indicated that a specialist nurse is essential to enhance nursing capacity in taking a lead role in diabetes and as a patient resource.

PP3:

”There should be a specialist in the program.‘ PP1:’ The more I care, the better blood glucose results.”

It appeared that patients themselves recognized that self-management was not entirely within their control, and therefore, the connection with a family member was meaningful.

PP2:

”My wife, because she prepares my food.‘ PP3:’ My daughter is more caring.‘ FP2:’ His wife or one of his children if not busy.‘ FP3:’ Mostly the husband or the mother.”

The operational aspects of the nurse-led family approach

The themes that emerged from participants helped clarify the functional aspects of an NLFB intervention development. Participants from the three groups suggested various recommendations about the appropriate intervention venue, expected intervention timeline, and follow-up approach.

All participants perceived the clinic as the most appropriate site for the intervention. They justified it based on safety, convenience, privacy, and professionalism. One nurse suggested extra home visits.

PP3:

”Hospital … will be more professional.‘ FP1:’ The clinic… has the required equipment to help the patient.‘ FP4:’ I will feel confident when I come to the health centre.”

Participants also appreciated how any individualized education approach requires a practical timeline and follow-up. Suggestions included an educational input of 30 minutes and one to three months follow-up, depending on individual needs. It was suggested that education could be aligned with the clinic visit and HbA1c check-up.

NP2:

”Educating people within one month, they will grasp it.‘ NP4:’ 20 to 30 minutes is enough time.‘ NP1:’ They will follow up with the blood check-up every four months.”

All the participants confirmed that phone calls or clinic visits were the most acceptable follow-up mode. Participants agreed that phone calls would motivate patients and maintain the necessary impetus to support the intervention.

PP1:

”By phone and going to clinic or hospital, but by phone is a good deal.”

Theme 3: Merging the nurse-led family aspects into the current diabetes care.

Merging the nurse-led with or without family aspects into the current diabetes care was necessary for patients with diabetes. The three groups of participants described the challenges in implementing an NLFB intervention and highlighted the need for a collaborative approach. The two subthemes that constituted this theme were (challenges involving a nurse-lead or a family in diabetes care and the need for a collaborative process.)

Challenges of a nurse-lead and family involvement in diabetes care

The participants identified the diverse experiences, understanding, and perceptions about diabetes care arising from the patient health care experience and staff, the patient, and the family as a significant challenge in implementing new goals at both health service and patient and family levels. Nursing workforce shortage and busy schedules were the most frequently expressed challenges in providing care. Nurse participants highlighted the nurses’ role limitation and the lack of extended roles as inconsistent with patients’ needs. For instance, nurses are not involved in treatment decisions or medication dose adjustments.

PP3:

”The difficulties are the shortage of staff [nurses] and time.‘ PP1:’ There is only one clinic, and the doctor and nurses sometimes deal with twenty to thirty patients.”

Family participants indicated that a lack of family time could be a challenge. A minority of participants reported “family non-supportive behaviours” as a challenge. PP3:” It depends on their free time. Sometimes they have college or work.‘ PP4:’ The wife prepares the food and advises you not to eat a particular food and to exercise.” Participants generally perceived the NLFB intervention as two different approaches: a nursing component reported as challenging to implement. At the same time, family involvement was positive if a willing family member could spare time for this role.

The need for a collaborative approach

Whereas the participants supported a collaborative approach engaging multidisciplinary team members, an individualized patient approach was central to service delivery, with the acquisition of patient knowledge and social support. Most participants highlighted that nurses require appropriate knowledge to deliver patient-specific educational needs. Nurses’ positive attitudes and interests were reported as facilitators in providing the intervention. NP3:” Knowledge. My [nurse] knowledge, I can give them [patients].‘ PP1:’ She [nurse] has information about diabetes. That is why you want to see the nurse to provide instructions.” All participants expressed the need for an increase in the number of trained specialist nurses in the diabetes clinic. Several participants highlighted the need for improving clinic facilities, educational materials, and the multidisciplinary team.

NP5:

”The ministry could give evidence-based practice guidelines and workshops.‘ NP1:’ Advising the patient to visit the doctor shows that you are dividing the roles. You’re not doing all the work independently”.

Discussion

Using a qualitative descriptive approach ensured a better understanding of the proposed NLFB intervention procedures, barriers, and facilitators. In line with the MRC framework, the qualitative-based investigation laid the foundation by identifying the evidence base, thus informing the NLFB intervention’s development from a scientific base and culturally congruent context. The results of this study illustrate the importance of a multidisciplinary team approach and a patient-centred approach in PHC. The findings highlight specific challenges to shifting to an individualized patient-specific care approach. Participants in the study were generally aware of the nursing services and family support concept in diabetes management. Interestingly, the nursing participants were more oriented towards the procedural details of the NLFB intervention, while patients and family members were more concerned about the psychosocial aspects of the intervention.

The study found that the nurse-led approach is not mutually exclusive to the multidisciplinary team. Instead, nurse-led care was found to be inclusive within the multidisciplinary team. The current diabetes services in Bahrain do not incorporate nurse-led care within the interdisciplinary team, and the qualitative study indicates that participants did not fully understand nurse-led care. The study highlighted challenges to shifting to an individualized patient-specific care approach led by a nurse. Despite the literature findings on the benefit of nurse-led interventions on diabetes outcomes (Daly et al., 2017; Jutterstrom et al., 2016; Shaw et al., 2014), the study found limited understanding and acceptability of a nurse-led approach.

The study found that participants favoured the multidisciplinary approach over a nurse-led one. Despite the reported usefulness and effectiveness of nurse-led diabetes care (Guest et al., 2017), the literature also reported controversial views related to the acceptability of nurse-led care (Guest et al., 2017). A recent qualitative study experiences about a nurse-led multidisciplinary team of diabetic foot ulcer care highlighted the importance of a nurse-led interdisciplinary role within the multidisciplinary team (Nayeri et al., 2020). Favouring the multidisciplinary team was attributed to ensuring that complex wounds are adequately treated (Nayeri et al., 2020). An international meta-analysis on the effect of nurse-led randomized control trials on cardiovascular risk factors and HbA1c in diabetes patients found that most nurse-led interventions were implemented with physicians mainly as supervisors (Daly et al., 2017). This is due to the nature of nurses’ job limits in chronic disease management, such as diabetes, for example, the inability of nurses to prescribe or up-titrate therapy, and their reliance on physicians during diabetes management (Daly et al., 2017).

Nurse-led services were unfamiliar to participants, most likely due to the current limited role of nursing within the multidisciplinary team. This finding concurs with the study results, where nurses perceive the limitation of their role due to the inability to adjust insulin doses. Nonetheless, it appeared that nurses perceived heavier reliance on them within the multidisciplinary team. Thus, they highlighted the need for more trained specialist nurses. The findings confirm the need for nursing capacity building with nursing role development, including greater emphasis on a nurse-led approach.

The main difference between these findings and the international literature is the perception and direction of nurse-led diabetes care. The study showed that the “nurse-led concept” was not fully understood, and only a minority of nurse participants provided a positive impression of a nurse leading diabetes care. In contrast, in the USA and EU, the nursing role has been extended to Clinical Nurse Specialists and Nurse Practitioners with nurse-led services (Nursing IoMCotRWJFIotFo, 2011), while nurse-led interdisciplinary care seems to be a new concept in Bahrain and the Gulf region. Contrary to the study findings, the evidence from studies reporting on a nurse-led service conducted outside of the Gulf region, including Europe, North and South America, Australia, and Asia, showed improvements in health outcomes, particularly in glycaemic control (Chen et al., 2015; Daly et al., 2017; Edelman et al., 2015; Price et al., 2011). A recent qualitative study assessed nurses’ experiences with a nurse-led multidisciplinary team diabetic foot ulcer care in Iran. It indicated that most nurses had experienced a positive effect of nurse-led multidisciplinary team care (Nayeri et al., 2020). Thus, the study suggested that policymakers should be aware of the impact of implementing nurse-led multidisciplinary teams on performance and quality of care (Nayeri et al., 2020).

The cultural variation of health care in Bahrain is more oriented towards the conventional treatment approach led by a physician, with the nurse much less prominent in the multidisciplinary team. Thus, this difference between the international literature and the findings of this findings may indicate a lack of recognition of the significance of nurse-led diabetes care. There is abundant evidence from the literature supporting the identified determinants of improved diabetes outcomes in an NLFB intervention. Knowledge and social support were the key identified determinants to enhanced diabetes outcomes, while nurses’ busy schedules and lack of nurses and family time were challenges to an NLFB intervention. The qualitative interviews found that nurses, patients, and families perceived knowledge and social support as the principal determinants of improving diabetes outcomes. Also, some participants reported self-efficacy and willingness as additional determinants. All three groups of participants agreed that the critical health service challenge is the nurses’ busy schedules and lack of specialist nurses. A Bahraini cross-sectional study on PHC quality indicators also identified the need for resource allocation to prevent DM and its complications (Al-Ubaidi et al., 2014). At the patient and family level, all participants consistently found that the lack of time within families is the key challenge.

Nonetheless, some patient respondents described their challenges with both intended and unintended family non-supportive behaviours. A previous study on family support, adherence, and glycaemic control among participants with type 2 diabetes concurs with the findings that family non-supportive behaviour is associated with lesser adherence (Mayberry & Osborn, 2012). The behaviours’ impact on adherence has significant implications for implementing an NLFB.

In contrast to the study findings, certain behavioural predictors highlighted in the literature were not identified in this study. Diabetes-related behavioural predictors that have been identified in the literature but were not highlighted in this study included perception of control, perceived susceptibility to and severity of illness (Lerman, 2005; Sabaté, 2003); development of diabetes self-management plans (Lerman, 2005; Wens et al., 2008); beliefs about treatment plan (Sabaté, 2003). In addition, some of the identified determinants, such as knowledge and social support, were named inconsistently in the literature, depending on the model/theory used, for instance, intervention functions, determinants, needs, tasks, or behavioural change techniques (Michie & West, 2014). Regardless of the given names, most importantly, the identified determinants from the literature were consistent with the study findings. This difference between the international literature and the findings of the identified determinants for the NLFB intervention may indicate a lack of recognition of the complexity of behavioural change in diabetes.

The international evidence indicates that research targeting the interface between adults with chronic diseases and their families is relatively scarce (Torenholt et al., 2014). Despite the wide use of family-based interventions in managing diabetes among children, the existing literature suggests their limited use among adults (Baig et al., 2015; de Wit et al., 2020). Family intervention increases the convenience of care by providing care at an adequate site (Baig et al., 2015; Torenholt et al., 2014). Family emotional support and reinforcement might play a vital role in adherence to diabetes treatment recommendations, especially in the Arab context, where the family is still intact and cohesive (Al‐Mutair et al., 2012). It has been shown that patients with T2DM in Bahrain had a locus of control more oriented towards family members than patients with T2DM in Ireland (Whitford & Al-Sabbagh, 2010).

Some cultural variations related to family involvement illustrated certain similarities and differences between the international literature and the study findings. Family-based intervention is an area with much potential in the Arab world, where the family is a closely functioning and cohesive unit (Al‐Mutair et al., 2012). Consistent with the study findings, the Crescent of Care nursing model capitalized on the role of family and nurses in Arab culture (Lovering, 2014). The Crescent model is based on how nurses’ cultural beliefs about health, illness, and healing blended with their professional values and care experiences. Within the context of cultural nursing care, the model’s centre is the patient and family as the focus of care, surrounded by nursing care. Similarly, the Crescent model reflects the cultural importance of family as the primary social unit in Arab culture and the nurses as crucial health care professionals. In a similar pattern to the NLFB intervention development, the Crescent model recognizes nurses’ leading role in health care and addresses the social needs of the patient and family (Lovering, 2014).

Worldwide, nursing leaders are advancing healthcare service, research, and policy efforts to achieve all 17 the United Nation SDG. The WHO “Vision 2023: Health for All by All” acknowledge the critical role nurse play in achieving health for all by all targets (Haka et al., 2021). Strengthening nursing to support the achievement of SDG adds great benefits, such as promoting health and well-being (SDG 3). Bahrain is one of the leading and advanced countries in achieving the requirements of the SDGs in in accordance with the Government’s programmes of action (2015–2018) and (2019–2022) to achieve the SDGs (Khalifa et al., 2023). From an NLFB perspective, it is recommended that actively engaging the nurses in leading roles promotes a healthier population. For instance, maximizing the nurse-led roles in diabetes care can empower them to take key actions towards the contribution to SDG 3 in line with Bahrain Economic Vision 2030 (Khalifa et al., 2023).

From an Arab cultural context, the difference between this study and the international literature is Arab culture is the nature of family involvement. The qualitative study indicated that the target family member to support the intervention should be a blood relative or a spouse. In contrast, a recent review on family therapy for adults with T2DM reported that some family intervention studies do not describe the nature of the family member’s involvement (de Wit et al., 2020). This qualitative study finding is uniquely different from other international studies where friends or extended family are accepted and defined as a potential person to support a family-based intervention (Bennich et al., 2017; Brown et al., 2002; Keogh et al., 2011; Wichit et al., 2017).

Most of the published trials assessing family-based interventions define family as a relative, friend (Brown et al., 2002; Keogh et al., 2011; Wichit et al., 2017), or caregiver (Bennich et al., 2017; De la Fuente Coria et al., 2020; Subrata et al., 2020). The difference between the international literature and this qualitative study is that all participants did not regard a friend as a family member, as the relationship is harder to define regarding the degree of involvement and continuity. Family members included parent; grandparent; child; a grandchild; sibling; aunts; uncles; nieces; nephews; stepparent, or stepchild. This finding of only a blood relative or spouse as the appropriate person for a family-based intervention reflects the family-oriented culture in an Arabic country like Bahrain, where the close family serves as the bedrock of society.

Family as a source of support has been described concerning gender differences in the existing literature (Bennich et al., 2017). From the perspective of gender differences, the participants nominated family members as all females in the qualitative study. A recent integrative review indicates that female and male partners can provide effective verbal and instrumental support. However, supportive communication varied according to gender (Bennich et al., 2017). Male partners used commands such as should eat and not to eat, whereas female partners often used more accommodating language, such as I try asking whether he balances his food’.

Nonetheless, the literature indicated that patients appreciated either gender but highly pronounced women as a source of effective, more frequent social support. Evidence shows that females’ ability to communicate, help, and share responsibility is supportive (Bennich et al., 2017). This evidence justifies the predominant selection of female participants in this qualitative study.

Furthermore, this qualitative study highlighted a key recommendation on family involvement in a patient-centred diabetes intervention, such as the NLFB intervention. A Bahraini qualitative study on family members’ participation in the Intensive Care Unit expressed support from nurses and families for family involvement in patient care (Fateel & O’Neill, 2015). The study suggested a key recommendation of having clear policy guidelines to guide family participation in patient care (Fateel & O’Neill, 2015). A collaborative approach fostering a partnership between patients and providers is vital, and a role clarification of patient and family members is needed. Simultaneously, nursing care and family involvement require adherence to local and international standards of care.

Conclusion

To conclude, guided by the development stage of the MRC framework, this study used a qualitative method to explore the views and experiences of 16 participants from key stakeholders. The strength of this qualitative lies in being the first of its type in Bahrain to involve nurses, patients, and families. The study found the practical components of the NLFB intervention that can be used in formulating intervention strategies for nurse-led and family-based intervention in Bahrain. The Stakeholders’ active involvement is beneficial for intervention designing a sustainable, culturally congruent NLFB intervention. However, the small sample and the sampling approach limited the capacity to extrapolate these findings, but the emerging themes from the qualitative study can be used in designing a nurse-led and family-based programme in Bahrain and the GCC.

This study provides a recommendation for nursing education and practice. The study suggests utilizing the identified determinants in diabetes education packages at practice. The study recommends stakeholders embrace nursing empowerment strategies to enhance the nurses’ preparedness for advanced roles, such as nurse-led care. While this study explored positive aspects of family involvement and the nursing workforce, it has also identified areas where nursing development and further inclusion in patient and family health care service could positively influence the management of T2DM in Bahrain.

Ethics approval

This study received ethics approval from Royal College of Surgeons in Ireland Research Ethics Committee.

Acknowledgments

The research team would like to thank Ms. Mona from the Ministry of health for the support in the recruitment of participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2024.2323060

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

The authors disclosed receipt of the financial support for the research, authorship, and/or publication of this research from the Royal College of Surgeons in Irealnd.

Notes on contributors

Khadija A. Matrook

Dr Khadija A. Matrook is a lecturer in Nursing in RCSI Bahrain. While studying and working at national and international levels, Dr Khadija have an experience of about 19 years in nursing education, public health, and research. She worked for RCSI, Ministry of Health, World Health Organization, National Health Regulatory Authority, and Geneva foundation for Medical Education Research. She holds a PhD from RCSI- Ireland, Master of Public Health - USA, Advanced diploma in Cognitive Behavioural Therapy - UK, and BSc Nursing.

Seamus Cowman

Prof Seamus Cowman is a Professor Emeritus (Nursing) in the Royal College of Surgeons in Ireland. Pro Cowman have over Twenty years of experience teaching students and supervising research. His teaching experience includes undergraduate and postgraduate students. On subjects areas of Clinical nursing practice, Nursing research, Nursing standards and quality, Professionality and accountability, Pro cowman supervised six PhD students, to completion, 6 MSc and over 80 MSc Dissertations.

Maria Pertl

Dr Maria Pertl is a Lecturer in the Department of Health Psychology. Maria completed her PhD, MSc, and undergraduate degree in Psychology in Trinity College Dublin. Her doctoral research, conferred in 2013, investigated the contributing factors to cancer-related fatigue and evaluated the effectiveness of a psychological intervention for cancer survivors with persistent fatigue. Maria is on the Editorial Board of BMC Psychology. She has been on the executive committee of the Division of Health Psychology in the Psychological Society of Ireland since 2016.

David Whitford

Prof David Whitford is the President, CEO and Registrar of RCSI & UCD Malaysia Campus. Pro Whitford have over 30 years of research experience, starting as a GP trainee, in a research general practice, in the first research Primary Trust in England and latterly in RCSI and RCSI Bahrain. This has led to over 50 peer reviewed publications in international journals and over €2 million in research grants. Have supervised 3 PhDs and 7 Masters to completion, alongside multiple undergraduate research studies: