The meaning and validation of social support networks for close family of persons with advanced cancer

Cancer care has to a greater extent come to be carried out at home. The need for such care is often sporadic at the outset, but tends to become more intense as the illness evolves. Taking on the new role and responsibility as caregiver, the family member must deal at the same time with the sudden onset of cancer and its potentially life-threatening nature [1‐3]. In the early stage of cancer, the emotional reaction to a loved-one’s illness can be of a chaotic nature. Research has shown that there can be even greater risk of psychological distress for the family than for the patient [4], and the families of cancer patients can exhibit symptoms such as sleeplessness and depression [5, 6]. Furthermore, family members may have to fulfill major life demands besides caring, for example holding down a job and childcare [7]. Those family members who do not have access to personal support or a social network are at high risk for depression [8, 9].

Most research on the families of persons with cancer has focused on breast or prostate cancer, rather than cancers with a worse prognosis [10, 11]. The scant literature on the families of lung or gastrointestinal cancer patients deals with the role of the caregiver and the risk (and predictors) of burden and depression. The results show a particularly high risk of emotional burden and psychological distress [12‐14].

Social support is increasingly identified as helping people adjust to a stressful life. However, despite the large amount of empirical research on such support conducted in health care in the last 20 years, the findings remain inconsistent. This inconsistency can be attributed to the use of different measures and different operational definitions of the term social support from one study to the next [15, 16]. Finfgeld-Connett conducted a study [17] to clarify the concept of social support by using findings from three linguistic concept analyses and 44 qualitative studies. The concept analysis revealed that a common way for nurses to view social support is as emotional and instrumental support [17]. Emotional support consists of comforting behaviours, which are intended to alleviate uncertainty, anxiety, hopelessness and depression. Instrumental support consists of providing tangible goods and services such as transportation and assistance with household tasks [17]. Another way of defining social support, commonly used outside of the caring context, is to make a distinction between structural and functional support [18]. Structural support implies a network of interpersonal relationships, involving relatives, friends and co-workers, through which the person is attached to his or her community. Functional support is usually described in terms of the provision of information, tangible support and emotional support [16‐19]. Besides inconsistencies in descriptions of social support, the similarities between caring and social support can also be confusing in the literature [20]. Caring and social support have comparable attributes and both concepts are characterised as dynamic interpersonal processes directed towards improved mental well-being. In contrast, physical well-being is commonly only an outcome of caring when social support is connected mainly with the nonprofessional area [17, 20].

A support network can be a resource for family members in a time of crisis [21‐24]. There is a need for further research regarding the presence of social support networks for the families of persons in the early stage of treatment for advanced lung or gastrointestinal cancer. Such research will contribute to a better understanding of the family members’ need for support in a drastically changing life situation. There is at the same time a need to investigate what the term social support is taken to imply. Despite ubiquitous use of the term by both lay people and professionals, there is still a lack of clarity about its meaning, and social support is easily confused with, for instance, caring [17]. Against this background, the main aim of the present study was to explore the meaning of social support networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study’s empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing. The term “family” is taken to include more than just biological relatives or people related by marriage, referring instead to people identified by the patients as playing a key role in their lives [25].

The participants’ descriptions resulted in one theme Confirmation through togetherness, and nine subthemes: (1) Need of support, (2) Network to turn to, (3) Understanding and support from relatives, (4) Encouragement from neighbours and friends, (5) Greatest understanding from those who have experienced crises of their own, (6) Involvement of fellow-workers and employer, (7) Spiritual belief in supportive community, (8) Information and personal support from health-care staff, and (9) Desire for a deeper relationship with relatives (see Table 3). The most frequent subtheme was Understanding and support from relatives. In the following text the theme and subthemes are described and sorted in accordance with the Finfgeld-Connett model (Figure 1). Three of the subthemes were classified as antecedents of social support, the other six as attributes of it; and this support is divided into two types, namely Emotional support (ES) and Instrumental support (IS). Each subtheme is illustrated through two quotations to clarify the meaning of social network.

The findings of this study have identified the significance of the social support network for family members in the early period after a close relative has been diagnosed as having lung or gastrointestinal cancer. Our findings verify the definition of social support as a reciprocal exchange of verbal and/or nonverbal information [17]. The main finding in the inductive analysis was expressed through the theme Confirmation through togetherness, which entails being seen and confirmed as a person in one’s new situation of having a loved person with life-threatening cancer in the family, and being respected for one’s experience and knowledge of the sick person’s life situation. The participants indicated that strength was derived from togetherness, from a sense of being an active member of a community and encountering sympathy. The relationship as member of a community is interpreted as more equal than where there is an advocative interpersonal process [17]. The predominant providers of support in the case of the present study were mainly lay persons. Health-care professionals are considered as support when lay persons cannot provide the support that is required [17], and in this case the advocative interpersonal process may be common.

Validation of our findings through the previous metasynthesis revealed that half of the meanings of social support networks are already well-known from previous qualitative research [17] (i.e. confirmation, information, encouragement and spiritual beliefs) whilst togetherness, understanding and involvement were not described. One explanation of the discrepancy between these results is that most of the studies in cancer care are based on descriptions of need of social support or interventions from the perspective of professionals [17, 34]). However, the present study verifies that social support is provided mainly by non-professionals, and this may be one reason for the additional meanings found in the study. Another possible explanation is that social support is context-specific and previous research has mainly focused on patients’ need of social support as part of caregiving [17] whilst the present study focuses on the social support family members receive mainly from lay persons.

The comparison of the findings of our study with the metasynthesis study by Finfgeld-Cornett is a response to existing inconsistent findings in the literature about social support which limit its usefulness in nursing [17]. In nursing science there is also need for more research that can inform practice, and when the issue is complex it is necessary to carry out a chain of studies with different designs before recommendations for practice can be made [17]. During the last five years there have been an increased number of interventions for informal caregivers in cancer and palliative care. It is necessary to continue to focus on mechanisms of intervention, tightly focused aims and outcomes, robust designs and a plurality of models and target populations/settings [34]. Our findings show that networks of significant others (relatives, employer, fellow-workers, etc.) are experienced as meaningful by family members and give them confirmation in their distressing life situation. Characteristic of this situation is that the family member is helping the patient through informal caregiving whilst at the same time trying to prepare themselves for the person’s eventual death [35]. Confirmation lightened the distress and made it easier to deal with the situation [36‐38]. Finfgeld-Connett [17] established that the need for social support has a psychosocial substratum, which was verified in the present study through the antecedents Need of support and Desire for a deeper relationship with relatives. Family members also spoke, though less often, of receiving help with practical matters, which spared them additional distress.

Several steps are needed in the chain of studies [39] about social support networks. One is to examine nursing intervention to bolster existing networks or to promote the development of new ones [17]. Another step is to develop instruments for use in the evaluation of non-professional social support based on Confirmation through togetherness and the main attributes. Developing measurement instruments [17] from this expanded conceptual model could encourage nurses and other health-care professional to focus on family members’ personal networks as a way to strengthen mental health. Nurses should reconsider social support as a part of nursing intervention and differentiate social support from concepts such as caring [17].

In the present study, family members appreciated support from neighbours; it gave emotional relief and strengthened their ties to these neighbours [40, 41]. The findings also revealed that some family members desired a deeper relationship with relatives and wanted to talk to them more. Relatives could not always face their own and the family members’ sorrow. When the family members did not get the support they wanted from relatives, they felt alone and isolated [38]. This feeling of isolation was not experienced in relation to neighbours, fellow-workers, employers and health-care staff. Possibly family members had higher expectations of close relatives with regard to the providing of support.

In addition to the social support network, the person’s own activities to manage the distress are of importance for mental health [17]. A previous study within our larger research project revealed that being with other people is a way of distracting family members’ thoughts. They can think of something else for a while when in the company of friends and co-workers. They find temporary solace and escape from their worries [27]. However, it is important to distinguish between “seeking social support,” which is a theoretical construct of management or coping, and (simply) “social support,” which requires other persons’ willingness to participate in a mutual exchange with the person seeking the support. Management is based on the person’s own appraisal of the actual demands and effort to cope with the current problem [42]. Social support consists of the actions that others perform to assist a particular person [19, 43‐46]. The person’s capacity for coping with distress partly depends on the support he or she receives from the family and the social network [20, 42, 47].

Despite the fact that religious beliefs are more common in other countries than in Sweden [48], the family members in this study derived comfort from spiritual beliefs, through the sense of togetherness derived from sharing Christian belief with friends from church. A similar finding emerged from a study involving four interviews with 20 patients with inoperable lung cancer and their informal caregivers over a one-year period [49]. Many of the patients in their last year of life expressed spiritual needs involving seeking meaning and purpose in life. However, family members also had their own spiritual needs [49]. Incorporating spiritual well-being into health care is essential as existential diversity grows in globalised societies, which means that health-care staff need to be very aware of each patient and family member’s particular needs and must never view anything as just a matter of common sense [50]. When patients and family members were given the opportunity to discuss their spiritual needs with staff, they valued this greatly as it validated their concerns and made them feel cherished [49]. However, patients and family members were often reluctant to take the initiative in raising spiritual issues with “busy” staff. They did not see spiritual needs as directly relevant to the health-care professional’s role, for which reason they actively sought to disregard their spiritual distress [49]. The need for spiritual care was investigated in a study with 156 adult cancer patients and 68 family caregivers. The findings showed that some cancer patients and family caregivers are enthusiastic about receiving some form of spiritual care, whilst others do not want it [51]. However, religion and spirituality are two separate constructs, not interchangeable though sometimes overlapping. Religion, often centrally concerned with spirituality, is also a social phenomenon, characterised by social and cultural concerns and goals. Spirituality is a much broader construct than religion and the two constructs do not overlap for people who are spiritual but do not practise a religion, or indeed for people engaged in religious practices who are not spiritual [52, 53]. Staff require knowledge of spiritual beliefs and spiritual caring, which also implies reflection on and awareness of their own beliefs [54]. Using a theoretical framework and guidelines can better prepare staff to incorporate spirituality into their practice [52, 53].

Family members expressed a need for informational and personal support from health-care staff, which has also been found in previous research [55]. Family members feel confirmed as persons important for the patient if they are listened to and respected by staff [36, 38]. An interesting finding from the present study is that participants found the most supportive persons to be other people with similar experiences. This is an aspect that could be integrated into interventions in health care to great advantage. Furthermore, some participants expressed a need for psychological support for close relatives who could not deal with someone in their family having advanced cancer. This indicates that staff need to apply a family system approach to assist the family [56]. This, in turn, underlines the importance of developing supportive interventions from a preventive perspective at an early stage of the illness trajectory. Research shows that the design of interventions directed towards family members should be based on the specific needs of these people. Support groups using the Internet as a forum to facilitate supportive communication are increasing in number [57, 58]. Interactive web-based programs for cancer patients and their caregivers offer an opportunity to deliver tailored information in an efficient, accessible and cost-effective manner [59]. However, there is an urgent need to evaluate the implemented interventions using valid methods and study designs such as randomised controlled studies, as also to assess lay persons’ provision of social support from the family members’ perspective. At present there is only limited evidence of the effectiveness of support interventions [60].

Our study verifies that a social support network involves reciprocal exchange of verbal and non-verbal information. The providers were mainly lay persons and social support was abstracted into the theme Confirmation through togetherness. The family members felt themselves to be members of networks, indicating a more equal relationship than in a care relationship with health-care professionals. The networks contributed information, understanding, encouragement, involvement and spiritual belief systems. It is a question of one or more networks linking relatives, friends with and without similar experiences, neighbours, employer, fellow-workers, members of their spiritual community and health-care professionals. The findings of the study expand the previous conceptual model in nursing with regard to social support by presenting the family members’ perspective. Besides their mainly positive experiences of social support networks, the family members reported distress with regard to close relatives who shied away from the troublesome situation.