This present study focuses on what patients are concerned about just before returning home after initial rehabilitation. The eight interviews with patients with traumatic spinal cord injury reflect various expectations, wishes, and worries in relation to returning home after hospital rehabilitation. Each interview reflected an individual’s unique perspectives. There was some variation between the interviews which may be related to differences in the patients´ age at time of injury, educational level and social circumstances, as well as differences in the patients’ psycho-social challenges, financial status, and economic possibilities.
Overall, the study findings stress what is known about community needs, various barriers, and problems [1
]. The comparative analysis of the deduced categories revealed that TSCI patients want the best and have positive expectations; however, a degree of uncertainty is apparent and with good reason. In line with the literature, the present study shows that the patients expect some barriers and problems in relation to practical issues like training and accommodation, besides maintenance work and economy [1
]. Beyond these practical issues, the interviews uncover that the patients are concerned about a number of more basic issues such as their new identity, social relationships, and being understood.
The patients worry and feel uncertain by leaving the center, which is in conformity with previous findings [23
] that show that the rehabilitation center is ideally designed for SCI individuals, among others because it offers continual presence of professionals to support and guide the patients. Patients worry about how it will be when they return to “the real world” environment at home without the presence of professionals. Our finding that peer support is of high value is also in line with previous studies that find that peers exchange experience of living with SCI, both in terms of practical and personal issues [24
]. Leaving peers means leaving some who know what it implies to be injured.
Return to work is a major challenge in rehabilitation after SCI, [25
], and unemployed SCI persons deem themselves capable of working [28
]. In line with that, we found that the patients are confident that they can manage a job and that they hope to return to work. For patients, work involves identity, colleagues, earnings, and independence. There is much at stake, and they therefore cling to the hope of getting back to work.
In relation to the municipality, the patients hope that their real needs are met and that their situation is understood. They hope that they can safely reach out when they really need it, and that decisions will be based on confidence in the person who seeks help and on insight into the TSCI patient’s situation.
The relation to the partner is also changed, and several of the patients worry about the relation and their marriage. This is with good reason because it has a tremendous impact on a person when the partner sustains TSCI [6
]. In this vulnerable
situation, communication is difficult [29
], and fear of being left or being lonesome was expressed by the majority of the patients.
Relations, a recurrent theme spanning all four identified categories, encompass relations to partner, children, parents, family in general, friends, acquaintances, colleagues and health professionals, as well as the health and social staff in the municipality. The TSCI patient understands that because of the injury, he or she has a new life situation that unfolds on new terms. The staff at the center have insight into this situation and understand the patient, and this provides reassurance. At home, the same deep insight into what SCI involves cannot be anticipated, and this may be frightening. The SCI individual is ”not the same” and ”will not return to the same”; so in this sense life as such, living with a partner, or the premises for dealing with others will never be the same again. Therefore, the TSCI patient must get on with life under new conditions. Their worries, hopes, and wishes therefore concern whether those with whom they have relations will be able to achieve the necessary insight to understand their new situation. It concerns the TSCI patients whether the partner will be able to cope physically and mentally and will be able to live with the demands that arise following the injury.
Addressing relations seems to be of crucial importance to the individual. Meeting with patients´ network, defined as individuals who have an important relation to the injured individual, has been suggested as a means to promote openness in communication during the transitions process [30
]. At such, network meetings discussing the impact of SCI on relationships could be arranged; situations that might cause misunderstandings could be discussed; and values, norms, and traditions could be debated. Network involvement might solve the patients’ dilemma of needing to be understood by significant others while being nervous of being honest about their worries and concerns. In such an approach, it could also be possible to address the partners’ need for support.
The present study findings enhance our understanding of issues related to returning home perceived at first hand by the affected individuals. The interviews provided a broad description of expectations, wishes, and worries in relation to returning home after hospital rehabilitation. Because life never will be the same again, there are good reasons for open communication
about what TSCI means to the individual and his/her relations.
The findings offer information important to the rehabilitation team. The interviews suggest that addressing patients´ relations in their returning home process is important to the patients.