Dignity therapy has been shown to moderate the bereavement experience in family carers when they were interviewed 9 to 12 months after death , but no previous studies have looked at the impact of the therapy on family carers at the time of the intervention. We hypothesised post-intervention decreases in burden, anxiety and depression scores and an increase in hope, but there were no significant changes. Rather, our population showed an increase in burden which correlated to a decline in the physical function of the patient during the study period. This effect is consistent with research of burden over time in MND family carers [15–17]. Without a control group, we are unable to ascertain whether dignity therapy had a prevention effect against expected increases in burden, anxiety, and depression, or a decline in hopefulness.
The individual results on anxiety and depression are more encouraging and suggest that dignity therapy has the potential to decrease anxiety and depression in family carers who are experiencing moderate to high levels of distress. This is similar to the findings for terminally ill cancer patients, where distressed individuals had a decrease in anxiety and depression scores , but those with low baseline levels of distress showed no change .
Acceptability of dignity therapy was mixed. Family carers felt that the therapy provided a benefit to their family members and that the document would help them in bereavement, and most rated the experience as satisfactory and one they would recommend to others. Whether a family carer was directly involved in the therapy had little impact on the acceptability or feasibility of dignity therapy. Rather, the comments provided on the feedback questionnaire suggest that family carers’ level of acceptance of their partner’s imminent death, or the quality of the relationship between family carer and partner, may lead to dignity therapy having a potentially negative impact on family carers at the time of the intervention.
Strengths and limitations
The strengths of this study were the high response rate and high completion rate of MND family carers, the use of MND-specific cognitive and health status measures, and the demographic characteristics of the sample are generally representative of MND family carers. The limitations include inadequate power to discover small to moderate effects, mild to moderate levels of distress at baseline, and the lack of a control group. The study group may not be representative of all MND family carers because those who declined to participate may have been more distressed, and people with MND with severe cognitive impairment and their family carers were excluded from the study.
Implications for future research
The effectiveness of dignity therapy in decreasing perceived caregiver burden, anxiety or depression, or increasing hopefulness in MND family carers could not be determined in this study. A randomised controlled trial with a greater number of participants is needed, perhaps incorporating a stepped-wedge or cluster design. An experimental study focusing on distressed family carers is warranted to determine if dignity therapy has the potential to decrease anxiety and depression. A qualitative study with family carers is indicated to explore more fully the mixed acceptability results provided in the feedback questionnaire. Further, a longitudinal study would determine if the document was helpful to carers following bereavement.
Dignity therapy may trigger emotional upset in people with MND who are experiencing emotional lability and this was frequently encountered. Emotional lability, also known as pseudobulbar affect, is an MND symptom which has the potential to cause distress to the person with MND and their family carer if it is not treated sensitively and therapeutically. In our study, we provided a supportive and safe environment, information and psycho-education, and normalised the symptom. Other ethical challenges encountered include negotiating complex relationships of participants and family carers, minimising harm to both parties as well as extended family members through what was written in (or left out of) the generativity document, and balancing the interests of the family carers with those of the patient. These challenges suggest that the skillful application of dignity therapy by a trained psychotherapist who is knowledgeable about MND is paramount in any future research.