Scandinavian Journal of Caring Sciences

Pardis Momeni RN, PhD, Kristofer Årestedt RN, PhD, Anette Alvariza RN, PhD, Elisabeth Winnberg RN, PhD, Ida Goliath RN, PhD, Åsa Kneck RN, PhD, Janeth Leksell RN, PhD, Mats Ewertzon RN, PhD

First published: 09 July 2022

https://doi.org/10.1111/scs.13096

Abstract

The aim of this study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care within four care contexts: the care of older people, psychiatric care, palliative care and diabetes care.

The design was an explorative cross-sectional survey study. Data were collected in Sweden using the Family Involvement and Alienation Questionnaire-Revised (FIAQ-R). It measures family members' experiences of the healthcare professionals' approach and the family members' feeling of alienation from the provision of professional care.

A total of 1047 questionnaires were distributed to family members using convenient sampling method, of which 294 were included. Data were analysed using rank-based, non-parametric statistical methods.

The results indicated that most respondents experienced a positive actual approach from the healthcare professionals. Many participants rated the importance of approach at a higher level than their actual experience.

Participants in the context of diabetes care reported a more negative actual approach from the healthcare professionals than did participants in the other contexts and considered the healthcare professionals' approach towards them as being less important. The results for the entire group indicated that the participants felt a low level of alienation from the professional care.

Participants in the context of the care of older people reported significantly lower level of feeling of being alienated than did participants in the contexts of psychiatric care and diabetes care. The differences between participants in diabetes care and other care contexts can possibly be explained by a more fully implemented self-care approach among the patients in diabetes care than in the other care contexts.

Even though the results are quite positive, it is still important that nurses consider a family-centred approach to better adapt to the needs of both the family members and the patients.

• From the artcile

DISCUSSION

Discussion of the results

The overall aim of this survey study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care in the above-mentioned context. T

he results for the entire group indicated that most respondents experienced a positive actual approach from the healthcare professionals. However, many participants rated the importance of approach at a higher level than their actual experience of approach, indicating a discrepancy between their actual experience and what they considered to be important.

Furthermore, the results indicated that the participants felt a low level of alienation from the professional care. We also compared the family members' self-reported encounters with the healthcare services between the four care contexts.

Participants in the context of diabetes care reported a more negative actual approach from the healthcare professionals than did participants in the other contexts. However, the participants in diabetes care considered the healthcare professionals' approach towards them as being less important than did participants in the other contexts. Regarding feelings of alienation, the only differences that appeared between the care contexts were among participants in the contexts of the care of older people and the contexts of psychiatric care and diabetes care. Participants in the context of the care of older people experienced a feeling of alienation at a lower level than did participants in those contexts.

To explain the findings, it might be useful to consider the different care traditions regarding family members' encounters with healthcare professionals.

Some possible explanations of differences found in our results in the contexts of diabetes care compared to other included care contexts are that people with type 1 diabetes are often encouraged to become more involved in diabetes self-management. This can possibly be due to self-management being considered one of the main treatment approaches regarding the disease[37].

Another reason is that in Sweden all people with type 1 diabetes are treated in outpatient care, making it rare for this group of patients to be treated at a ward, meaning that family members are rarely invited to participate in the care meeting in outpatient diabetes care. Furthermore, reviewing the well-established theories regarding self-care, for example, in Orem, Taylor and McLaughlin Renpenning[38], they also promote patients being more self-reliant and responsible for their own care.

Although self-care is crucial for patients living with diabetes, less attention has been given to the family surrounding the patient. It may be that the focus given to self-management has drawn attention away from the family. In this current study, participants in the context of diabetes care reported a more negative approach, and also considered the healthcare professionals’ approach as being less important compared to the other participants in the included care contexts.

This may be explained that the patients suffering from the disease have learned to continuously self-manage the illness, and may not consider the need for a patient–nurse relationship to be crucial for the well-being, and in the name of self-management have been thought to stand by your own and not involve family members in the care process. However, recently published studies regarding ongoing family involvement in diabetes care were shown to be crucial for the transition into a new lifestyle[39-41].

The question is whether, in the name of self-management, patients and their families are unconsciously excluded from the healthcare services. This results in a feature scenario where the idea of self-management will be re-evaluated so that healthcare professionals involve the patient's social network in the planning of care. Hill, Ward and Gleadle [42] showed that strong social support was vital for ongoing self-management. When social support was lacking, patients struggled alone with self-management and felt isolated from the health-care professionals, indicating that both patients and their family members need support.

In the context of palliative care, our study clearly showed that the participants reported highest levels of actual approach and considered the importance of approach of being the highest level of importance. Also, the feeling of alienation was expressed at a lowest level which indicates positive results for this group.

The results can possibly be explained by the fact that there has been considerable research during the last decade regarding the involvement of the family in palliative care, being highly effective and successful in forming care plans and policies [43, 44]. It is also the only care context of the four considered in this study that has incorporated the family into definitions in this area of care, which reflects the progress of published research. So far, the WHO definition has been the most dominant [45], but recently the International Association of Hospice and Palliative Care has suggested a redefinition that includes adopting a broader perspective of the patients [3]. However, family involvement is well established in both of these definitions and in other models for palliative care, described as a necessary and natural part of the given care, both nationally and internationally [46]. In a recommendation for policy regarding Comprehensive and Integrated Palliative Care, family-focused care was highlighted as important [47].

According to the results, care of older people has great similarities to palliative care, showing overall positive results. At the same time, it differs in some regards especially regarding family members expected involvement in the care. Compared to palliative care units there is less natural space for families in nursing homes, and the quality of available support for families varies considerably from one caring facility to another.

A study dealing with the ethical issues of family members in a nursing home setting concluded that there is a need to establish routines in clinical settings for informing and following up family members in a systematic way [25]. In a recent study, family members expressed the need to participate in care meetings and conversations [48, 49]. Other studies confirm these findings, stating the importance of families being able to participate in the care of the older person [8, 50].

Finally, in the group of psychiatric care the results indicated that family members experienced a significantly higher level of alienation than did family members in the context of the care of older people. One explanation may be the form of care and how it is organised, many times being outpatient contact compared to the form of care within nursing home (round-the-clock care).

Another explanation may be that compulsory care is practiced within psychiatric care, with previous studies showing that family members with experience of compulsory care reported higher levels of alienation than did family members without this experience [51]. It is also possible that younger people with contact within psychiatric outpatient care are more autonomous than elderly people in nursing homes, which may lead to them not wanting family members to be involved in the care [52].

The participants' experience of alienation in this study is in agreement with other studies conducted in the context of psychiatric outpatient care in Sweden [33] and Norway [32].