In this study the concept of freedom of choice is stated as the key concept in explaining the impact of long-term caregiving. With this concept of freedom of choice, a highly relevant new dimension is added to the understanding of the impact of caring on caregivers’ wellbeing. Perceived freedom of choice shows that differences in impact cannot be explained solely on the basis of stressors, buffers and contextual factors found in the research to date. Freedom of choice appears to give coherence to the factors that aggravate caregiving. This adds a new perspective to the research on caregiver burden. In order to ensure that the concept of freedom of choice is not itself a result of the burden process, the first (M.I.Z) and the third (M.G.) authors reread several of the interviews. The interviews were chosen at random and the researchers focussed on looking for confirmation of this possible reversal. It appears that reversal does not match the stories of the participants.
Thinking in proto types helped us to uncover this differentiating concept of freedom of choice. Perceived freedom of choice underpins our definition of the two main types of caregiver. For those who have a perceived freedom of choice to engage in caregiving – the type 1 caregivers - caregiving is mainly a process of gain, despite the invested time and energy. Caregiving gives extra meaning to their lives. For those who do not perceive they have the freedom to quit caregiving - the type 2 caregivers - caregiving is experienced as a process of loss. More importantly than the time and energy invested in caregiving tasks, for the type 2 caregivers it is the experience of the virtual loss of their partner or parent that makes their situation difficult to bear.
Within this group of type 2 caregivers we can identify two subtypes. The first subtype is the caregiver who accepts the loss and caregiving as part of their life and of which they have to bear the consequences. They manage to adapt their expectations. They are able to notice reciprocity and they experience togetherness by interpreting reciprocity. To some extent they retain autonomy while they reflect on a poorer but nonetheless meaningful life. The second subtype is the caregiver who feels captured. On one hand they cannot imagine a life without the care-receiver, while on the other hand they suffer because their sick partner or parent never shows any signs of gratitude. They do not consent to the consequences but can also not evade them. These caregivers feel absorbed by the demands and cannot handle caregiving.
This study has shown that the loss is mainly felt within the quality of the relationship and in psychosocial wellbeing. In fact, all levels of interaction between caregivers, care-receivers, their social environment, and the interpersonal relationship are affected by caregiving. Relationships become unequal; frail relationships and caregivers’ psychosocial wellbeing are negatively affected. This study points out that, besides attention to determinants of burden [5, 7, 10, 11, 14, 18, 20, 22] and reducing the tasks of the care receiver, more attention should be given to the consequences for the type 2 caregivers’ individual emotional needs and well-being. The results of this study are in line with existing, though limited, research findings on caregiver burden. These include lack of self-actualization , the importance of reciprocal social relationships , changed meaning in life, the profound sense of loss of companionship and intimacy, fulfilment of family roles, adjustment to persistent grief, as well as major disruptions to expectations for the future [1, 21, 23, 24, 31]. As the care-receiver and caregiver are together on a daily basis, the impact of caregiving is not caused by a single event, but by a series of events that confirm the sense of the loss, in the context of long-term disability. The concept of freedom of choice might add to our understanding of the differences outlined above and explain the variation in impact on the caregivers’ life. The concept of different types of caregiver is acknowledged in studies by [32, 33].
For professional practice this recognition of freedom of choice is important. In the assessment of caregiver needs the MHCN ought to assess this freedom of choice as part of the assessment. Type 2 caregivers are at risk and are therefore in need of support. It is likely that type 1 caregiver’s wellbeing is not as much at risk as the wellbeing of the subtypes within the second group. Therefore support for type 1 caregivers might be mainly practical and appreciative. Our findings not only point the need for practical advice and information about illness and illness-related issues but also to a further differentiation in a narrative coaching on themes such as loss and grief and how to find new meaning. Hence, support programs should not only be designed to reduce the symptoms of burden, but should focus on the wellbeing of caregivers and apply a competence paradigm for professional practice . An intervention should ideally use an empowering approach to encourage caregivers to redefine their personal life and focus on their caregiving strengths, and on 'living’, rather than on the reduction of caregiving tasks and their subjective burden. A relationship review could form part of the intervention. As suggested by other research, a pro-active approach is advised because the caregiver is often no longer able to ask for help. Regarding the nature of chronic mental illness and the differences in caregiver types, support programs for type 2 caregivers should consist of complex, multivariate interventions that are comprehensive, long-term, individually tailored and have the flexibility to meet the dynamics of caregiving over time.
The concept of freedom of choice may have implications for stress-coping theory as elaborated in the theory of Lazarus and Folkman . Although freedom of choice is not a concept the caregiver is aware of, it influences the caregiver's appraisal of stressors. The extent to which the caregiver experiences the possibility to end the confrontation with main stressors like care, difficult behaviour or emotional consequences might influence their primary coping.
Strength’s and limitations
To maximize our knowledge about the appraisal of the caregiving situation, we sought sampling diversity for type of relationship, gender, type of illness and institute, as these characteristics may influence the way the caregiver experiences the situation. This diversity provided different perspectives on the appraisal of long-term caregiving. These different perspectives facilitated constant comparison between cases. We conclude that we gathered rich data that sustained our insight into the process of appraisal.
To avoid ‘going native’  and the development of blind spots prejudicing the complete process, in addition to researcher triangulation the analyses were discussed with a third researcher (M.J.A.) with a different disciplinary background.
Despite sampling diversity we realize that we included only those caregivers who maintained caregiving. Although we have substantial variation in the perspectives of the participants, including participants who stopped caregiving could possibly have deepened our analysis. The respondents within this convenience sample were approached by their mental health care nurse. A total of twenty four caregivers were invited to join the study. Largely for emotional reasons, five caregivers declined to participate. During the interviews the participants were able to share emotional feelings about the care they provided and the impact of caregiving on their lives. We therefore think that it was still possible to gain insight into their emotions.