Support system integration: The Perceptions of People with Chronic Conditions

Introduction

People with chronic conditions usually have a support system consisting of several elements for instance; physicians, relatives, community nurses, and welfare professionals. Research indicates that integration of these elements could be beneficial, not only financially, but for perceptions of  quality of life [1]. The questions is: How do people in the Netherlands with chronic conditions perceive their quality of life in relation to their support system and its integration?

Theory/Methods

To answer this question a qualitative study was undertaken. Semi-structured interviews using the Life-line Interview Method [2] were done with 13 respondents with one or more chronic conditions.  Respondents described life events on a two-dimensional graphic representation with time on the horizontal dimension and effect on the vertical dimension. This allows for a depiction of life events and the ups and downs that accompany these events. Data were analyzed using content analysis in order to identify themes.

Results 

The findings suggest that respondents perceive their quality of life in terms of several dimensions such as participation, information, empowerment, and well-being. The research suggests that the perceived quality of life within these dimensions relate with their perception of their their support system and its integration.

Discussion

Below a brief discussion of these dimensions

Societal Participation: It is important for respondents to be able to participate in society. Elements in an integrated support system can contribute to making this possible.

Information/knowledge: Respondents indicate that they are, to a large extent, dependent on elements from their professional support system for information/knowledge about their condition, as well as practical information on for instance financial issues related to their condition.

Empowerment: In this dimension respondents acknowledge that a sense of empowerment is achieved through interaction and support from their system. Issues such as self-management and autonomy are included to this dimension

Well-being: Refers to a feelings such as acceptance, peace, happiness, and balance.

Conclusions

The key findings of this study suggest that quality of life for people with chronic conditions consist of several dimensions. The perception of quality of life is related to their experiences with their support systems and the level integration.

Lessons learned

Main lesson learned is that the support of people with chronic conditions  should facilitate the achievement of their (spiritual) goals.

Limitations

The number of respondents in this study was limited to 13. More interviews will take place in the coming months and the dimensions identified will be refined based on new data.

Suggestions for future research  

Based on anecdotal information it seems that the LIM interview method may have some therapeutic benefits, and could be a topic for future research.

1. Zonneveld, N., Driessen, N., Stüssgen, R. A., & Minkman, M. M. Values of Integrated Care: A Systematic Review. International journal of integrated care. 2018; 18(4):1-12

2. Schroots J.J., van Dijkum C., Assink M.H. Autobiographical memory from a life span perspective. 2004;58(1):69-85