Tuesday, 28 November 2017

Response to Demetra Horotan, 'Coping with Parkinson's'

Mari Carmen Portillo. PhD, MSc, RN. Associate Professor, Faculty of Health Sciences, University of Southampton. UK. M.C.Portillo-Vega@soton.ac.uk
M Victoria Navarta-Sánchez. PhD, MSc, RN. Lecturer, Faculty of Nursing, University of Navarre. Spain. mnavarta@unav.es
Regarding the commentary on our article (Navarta-Sánchez, 2017) we would like to show our appreciation to Demetra Horotan for her interest in the benefits of coping strategies for people with Parkinson's Disease (PD) and their family members. This is a fascinating area of research that needs further development especially if as nurses we want to make a difference in the lives of people with PD and their family members. We would also like to clarify and discuss the issues mentioned by Demetra Horotan in the commentary in JAN Interactive published on Monday, 20 November 2017.
Concerning the comment made about the use of the Chronic Care Model (CCM) we can confirm that the intervention design presented in the paper by Navarta-Sánchez et al. (2017) is based on the assumptions of the CCM because this model encourages an approach to support self-care, long-term monitoring, and the use of community and technology resources (Coleman et al., 2009). In particular, our intervention is focused on improving self-care through an enhanced process of coping with PD in people with the disease and their family carers. One specific strategy of this intervention among others (see Tables 5 and 6 in the above mentioned paper) is that nursing professionals could empower people with PD and family carers to develop more effective and sustainable coping skills in the community, which may improve their health, well-being and quality of life -- and this includes acceptance of the disease.
The assumption expressed in the commentary stating that reinforcing the acceptance of PD in both the patients and their family carers is an approach that appears to focus on a medical view is not accurate because recent research supports the need to work on the acceptance of the disease due to the concerns expressed by many people with PD and family carers and not to a medical view/preference.
Recently, a qualitative study (Kang & Ellis-Hill, 2015) and a review of relevant literature (Ambrosio et al., 2015) have come up with the same conclusion not only for PD but also for other long-term conditions. These studies highlight that the acceptance of the disease and its consequences is essential for people with PD and family carers to cope with the new situation, feel better and carry on with a meaningful life, and also evidence the difficulty that accepting the disease and the changes in their bodies and their lives involves for them (Kang & Ellis-Hill, 2015).
Furthermore, from a quantitative perspective some studies have shown significant statistical associations between the psychosocial adjustment to a chronic illness and the quality of life equally in people with PD and family carers (Suzukamo et al., 2006; Navarta-Sánchez et al., 2016) and the influence of coping skills in PD (Navarta-Sánchez et al., 2016) and other long-term conditions (Ambrosio et al., 2015). Therefore, this also supports the relevance of this approach if we want to contemplate patients’ and family’s wishes and needs and plan interventions accordingly.
In relation to the importance of using the Resilience Theory as a guiding framework in the design of the qualitative phase and the proposed intervention, we would like to point out two aspects:
  • The Resilience Theory provides an interesting positive point of view on people’s strengths needed to tackle adversity. However, this varies from the approach we presented in the paper based on the Chronic Care Model (Coleman et al., 2009) and the understanding of coping skills (Lazarus & Folkman, 1984). In our study we also aimed to identify negative coping skills used by family carers, like the tendency to focus their energies on the well-being of the patient exclusively to be able to reverse them. Also, our approach looked at other community and technology external resources, which could be used to encourage positive coping skills in people with PD and their family carers.
  • Contrary to the statement made in the commentary, without the Resilience Theory is possible to suggest strategies to strengthen family bonds. In fact, in our study we are highlighting strategies like the promotion of empathy to foster strong family ties and functional networks. In Table 5 of the paper we suggested that nurses may help patients and relatives to reflect on changes that each family member has experienced due to PD. Through the encouragement of these reflections, nurses could increase the empathy and reciprocal support in these families.
Regarding the criticism stating that in the paper little attention is given to the caregiver’s own health and handling of the chronic illness and that strategies should be aimed at reducing psychological burden, we would like to emphasize that:
  • Our intervention does contemplate the need for nurses to develop group sessions only with family carers. We consider that family carers have their own needs, some similar but others different to the patients’. Thus, although this requires an important effort of time and resources, it is necessary in order to deal with the health and well-being of family carers.
  • Finally, our intervention is part of a health promotion and prevention plan. For this reason, it is suggested that nurses should support the self-care in family carers in Primary Care Centres. Interventions focused on burden are necessary and relevant. However, here we are proposing an overarching prevention approach that could reduce the family carer’s distress also when it comes to personal and system burden. This is only possible through multifaceted-integrated interventions, which involve the use of community resources, and the adoption of healthy lifestyles and self-care skills among others.
Ambrosio, L., Senosiain García, J.M., Riverol Fernández, M., Anaut Bravo, S., Díaz de Cerio Ayesa, S., Ursúa Sesma, M.E., Caparrós Civera, N. & Portillo, M.C. (2015). Living with chronic illness in adults: a concept analysis. Journal of Clinical Nursing, 24, 2357-2367. DOI: 10.1111/jocn.12827.
Coleman, K., Austin, B. T., Brach, C., & Wagner, E. H. (2009). Evidence on the Chronic Care Model in the new millennium. Health affairs, 28 (1), 75-85. https://doi.org/10.1377/hlthaff.28.1.75.
Kang, M., & Ellis-Hill, C. (2015). How do people live life successfully with Parkinson’s disease? Journal of Clinical Nursing, 24, 2314-2322. DOI: 10.1111/jocn.12819.
Lazarus, R. & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer. ISBN: 0826141927.
Navarta-Sánchez, M. V., Senosiain García, J. M., Riverol, M., Ursúa Sesma, M. E., Díaz de Cerio Ayesa, S., Anaut Bravo, S.,… & Portillo M.C. (2016). Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Quality of Life Research, 25, 1959-1968. DOI: 10.1007/s11136-015-1220-3.
Navarta-Sánchez, M.V., Caparrós, N., Riverol, M., Díaz de Cerio, S., Ursúa, M.E., & Portillo, M.C. (2017). Core elements to understand and improve coping with Parkinson’s disease in patients and family carers: A focus group study. Journal of Advanced Nursing, 73, 2609-2621. DOI: 10.1111/jan.13335.
Suzukamo, Y., Ohbu, S., Kondo, T., Kohmoto, J. & Fukuhara, S. (2006). Psychosocial adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson’s disease. Movement Disorders, 21, 761-66. DOI: 10.1002/mds.20817.

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