People with activity limitations’ perceptions of their health condition and their relationships with social participation and experienced autonomy

Abstract

BackgroundPeople with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation.MethodsSurvey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation.ResultsPeople who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants’ activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation.ConclusionsPeople with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people’s activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people’s perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.

Association between engagement in cultural activities and use of general practitioner consultations: 7-year follow-up of adults from the HUNT study, Norway.

“…The perception of the participants’ health condition is important. A study by Meulenkamp et al has shown that people with activity limitations participate less in society, and if their limitation is long-lasting, they are more likely to participate in volunteer and club activities 47. Fancourt et al revealed findings that show that poor mental health is a barriers for engagement in arts activities 48.…”

Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

“…Furthermore, note that studies of the patient’s perspective [ 3 , 4 ] agree that patients with PAH often describe feeling insecure, isolated, and as living with an invisible disease, therefore, to fully eliminate the impact of PAH on a patient’s life, complex interventions in addition to medical treatment of the underlying disease are important, and therefore our treatment approach has the potential to support an individual living with PAH to cope with illness. The observed benefits of the investigated program to improve the perceived chance of participation in activities related to frequency of social contacts in the PAH patients might be due to the change in the perception about their health condition and the improved sense of self-control abilities, as is approved relevant correlations between these factors in other studies [ 33 ].…”

Comparing dysmenorrhea beliefs and self‐management techniques across symptom‐based phenotypes

“…As with other health conditions, women commonly have beliefs (also called representations) about dysmenorrhea (Adrián-Arrieta, & Casas-Fernández de Tejerina, 2018;Meulenkamp et al, 2019;Stuifbergen, Phillips, Voelmeck, & Growder, 2006). It is unknown how the beliefs women hold regarding their dysmenorrhea differ for women in different symptom-based phenotypes.…”