The experience of the support person involved in a lung transplant programme: results of a pilot study

In contrast to the high priority most transplant programmes give to the recipient's support system there is a paucity of studies referring to the experience of the respective support persons. This study sought to focus on the subjective burden of support persons and their unmet needs.

A questionnaire was designed for a cross-sectional study using numerical rating scales and fill-in-the-gap-items concerning subjective burden, stress symptoms, unmet needs, suggestions to improve the support person's situation. Participants were 39 relatives of adult transplant patients (22 cystic fibrosis transplant recipients, 17 recipients with other aetiologies) who had transplants 5 years ago (mean).

The acute illness stage was rated as extremely stressful by most of the respondents. However, even during the rehabilitation period, one third described themselves as very stressed. Stress related symptoms at or post transplant were reported by 82% of respondents (more mothers than partners). Symptoms mostly referred to depressive and anxiety states. Most support persons had to tackle organizational difficulties in order to stay with the recipient and faced financial burdens not refunded by agencies. Support persons made suggestions to improve the recipient's situation and those of other support persons. Regarding the recipient their advice referred to enhanced information giving, aspects of communication and better access to psychosocial professionals. Regarding another support person they suggested to be well-informed beforehand and to remain optimistic.

Mothers in this study seemed to be particularly vulnerable as support persons and thus deserve special attention. Few resources may be needed to achieve considerable benefit for the support person, such as arranging accommodation or identifying a team member to relate to.