I have never been invited—A cross-sectional explorative study of family members’ experiences of encounters with healthcare professionals in diabetes care

Åsa Kneck RN, PhD, Mats Ewertzon RN, PhD, Janeth Leksell RN, PhD, Kristofer Årestedt RN, PhD, Susanne Amsberg RN, PhD

https://doi.org/10.1111/scs.13197

Abstract

Aim

To explore the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals and feelings of alienation in encounters with professional diabetes care.

Methods

A cross-sectional explorative quantitative and qualitative design. The Family Involvement and Alienation Questionnaire—Revised (FIAQ-R), including an open-ended question, was answered by 37 family members of adult persons with type 1 diabetes.

Analyses included descriptive statistics and qualitative analysis. The study has received ethical approval.

Results

Family members rated the approach of the healthcare professionals as being somewhat positive and considered that the approach towards them is important. They only felt partially alienated from the professional care.

Qualitative data revealed that the family members often lacked direct access to the professional care and that their involvement was dependent on their relationship with the person with diabetes. Findings highlighted that the family members’ wish to be involved in the care was sometimes unanswered.

Conclusion

Based on the findings, it is reasonable to stress the importance of considering family members’ perspectives and involving them in diabetes care to improve overall patient support.

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https://doi.org/10.1111/scs.13197

BACKGROUND

An extensive amount of research has addressed the experience of persons living with type 1 diabetes, which entails daily demands of self-management. An otherwise automatic physiological function needs to be replaced by targeted daily actions of self-care, such as healthy coping, healthy eating, being active, insulin injections, monitoring, reducing risk, and problem solving [1].

Because most diabetes self-management takes place in social settings, family members become involved [2, 3]. The mutual reliance between people affected by diabetes and their social context emerges as an invaluable asset for ensuring effective diabetes management across all life stages [4].

Family members can contribute by providing a sense of belonging, stability and meaning, giving daily support in buffering stress, and by being a resource for the person’s health and well-being; all of which have positive effects on glycemic control [5–7]. However, social routines and dynamics can change, implying role modifications for both the person with diabetes and the family member, which can create tensions in their relationship [2, 3, 8, 9].

The cross-national Diabetes Attitudes, Whishes and Needs second study (DAWN2) [10] reports on the burden that family members experience when supporting a person with diabetes and the uncertainty they can feel regarding how this can be done.

Additional studies report family members’ high levels of stress, with overwhelming feelings related to difficulties in handling the restrictions in their daily lives. Key concerns described are fear of hypoglycemia, fear of complications, and fear of the death of the relative [2].

According to Swedish law, family members have the right to be involved in the shaping and implementation of care as long as this does not interfere with the care or become an obstacle [11]. Furthermore, international evidence-based guidelines emphasise the importance of considering family members when caring for persons with diabetes [5].

To the best of our knowledge, there is a gap in knowledge concerning how family members experience the healthcare professionals’ approach towards them and how important they consider the professionals’ approach to be.

Overall, it can be concluded that family members can contribute to the well-being of the person with diabetes and serve as a valuable resource for the healthcare service in supporting self-management on a daily basis. However, the family member’s situation can be demanding.

Being independent in one’s own decision-making is a key goal in a person’s diabetes care, but whether family members want to be involved, whether they can be involved, and the ways in which they could become involved in the professional care are important questions that remain unanswered. The opposite of being involved is to be alienated.

The concept of family members’ feelings of alienation has been studied in the context of psychiatric care. In a study by Johansson et al. [12], a significant association between the family members’ experience of the healthcare professionals approach, and their feeling of aliention regarding the care of their next of kin was shown. Lower level of being approached negatively was associated with higher levels of feeling alientated. Furthermore, in a study by Weimand et al. [13], a higher level of being approached positively was significantly associated with lower levels of feeling alienated, where family members considered openness and cooperation as essential aspects in the professionals’ approach.

This study intends to highlight the perspectives of family members and their involvement in the care of those with type 1 diabetes. It focuses on the family members’ experiences concerning both the healthcare professionals’ approach towards them and their feelings of alienation regarding the professional care of the person with diabetes.

Thus, the aim of the study was to explore the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals and feelings of alienation in encounters with professional diabetes care.

DISCUSSION

This study explored the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals towards them and feelings of alienation in encounters with professional diabetes care. The results show that family members of persons in diabetes care considered the approach of the healthcare professionals to be important and regarded the experience as positive, especially in terms on openness. On the other hand, family members expressed feelings of alienation in terms of being left out of the professional care.

Based on previous research, we know that having a family member with diabetes can have profound consequences for families, affecting their emotional wellbeing and other aspects of life [10]. This has also received increased attention in recent years as the focus for World Diabetes Day [19]. Nevertheless, only half of the family members who completed the questionnaire had been in contact with the healthcare professionals caring for their family member with diabetes.

The reasons for family members not being approached by the healthcare professionals is not within the scope of this study. Inevitably, we reflect on the possible differences between being a family member of an adolescent or of an adult person with diabetes. The latter may have their own need to manage on their own or possibly have to fulfil someone else’s expectation of being able to take care of themself, without the need for help or involvement from loved ones. Therefore, it may not be obvious to the healthcare professionals, or to the person with diabetes, to invite family members to participate in an encounter in the professional diabetes care in the same way as parental involvement in adolescents’ diabetes management [20].

The overall result was somewhat surprising since, even though they were not involved, the family members seemed, to a fairly large extent, to be pleased with the approach of the healthcare professionals. Earlier studies have described how living with diabetes and its daily self-management demands can be stressful for both the ill person and his/her family members [1–3, 9].

The family members’ need for involvement in the care, for education to be able to support the person with diabetes on a daily basis and maintain their own quality of life, have been described [10, 21, 22]. Several studies have shown that the interplay between the person with an illness, their family members, and the healthcare professionals increases the potential for good care and patient safety [2, 4, 6, 23].

Although the results can be interpreted as the participants being, on the whole, satisfied with the manner of indirect involvement in care, some of the qualitative findings revealed experiences of alienation that emerged in terms of feelings of isolation, highlighting the need for individual and flexible interventions in the care based on the needs of the person with the illness and their family members.

This has also been described by others [24–27]. It has been shown that family members require knowledge and skills concerning diabetes and need psychosocial support in order to improve the lives of the person with diabetes and their own lives [10]. Information and support can be provided by persons within the family’s network [28], but if network support is lacking or if communication with the person with diabetes is troublesome, then in order to be able to contribute knowledge to the care, the family members need to be invited to become involved in the care, if the person with diabetes so wishes [11]. If not, there is a risk of alienation of the family member, which means that the family members’ needs and wishes to be involved are not made visible.

Qualitative data from this study contributed information about family members who felt left out of the professional care encounter and who wished to be invited. Some found it strange that their experiences were not in demand. This is, as mentioned, in line with previous research.

On the other hand, some family members seemed satisfied and confident in the approach of the healthcare professionals, as long as the person with diabetes informed the family member about the follow up and evaluation performed at the visits to the diabetes centre. This prompts the idea that a trusting and communicative relationship between the person with diabetes and the family member can be as important a consideration as whether the approach used in the professional care is appreciated.

Thus, the dimension of the concept of involvement provides insight into multiple different aspects. It is possible that involvement can take more forms than having direct contact with healthcare professionals but can also be an indirect contact through the person with diabetes or even through other networks around the family member, such as social media platforms and online support [29]. The advantage of this should be balanced against the risk of unreliable information from social networks [30, 31] and also the risk of misunderstanding. In view of the above facts and discussion, we stress the importance of having an open approach by inviting family members to participate in diabetes care and advocating a trusting and communicative relationship between the person with diabetes and their family members.

The results of the present study are consistent with a previous study by our research group [3, 32]. Both studies underscore the favourable reception of healthcare professionals’ approach by family members, particularly with regard to their openness. However, family members also expressed feelings of alienation and a desire for increased involvement. Notably, variations were identified across different care contexts, wherein individuals receiving diabetes care reported a more unfavourable actual approach from healthcare professionals and perceived their approach as less significant.

These findings emphasise the necessity for nurses and healthcare professionals to customise their care strategies to accommodate the specific needs of family members and adopt a family-centred approach, thereby fostering a positive care experience for both family members and patients. In addition, further investigation is warranted to comprehend and surmount the obstacles constraining the interaction between healthcare professionals and family members in the domain of diabetes care.