Self-Management Components as Experienced by People with Parkinson’s Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature

Table 2

Characteristics of included studies.

Author and country	Aim	Participants	Collection	Analysis	Findings
(1) Hellqvist et al., Sweden [19]	To identify and describe experiences valuable for managing daily life after participation in the National Parkinson’s School (NPS) self-management intervention	25 people with Parkinson’s, 17 relatives	In-depth group discussion	Thematic analysis	Self-management interventions with a cognitive approach introducing techniques aimed at handling the psychological impact of disease in the lives of persons with Parkinson’s disease can promote self-care activities and increase life satisfaction. The benefits of the NPS were social connections and support from people in the same situation, as well as improved connection to family, society, and healthcare
(2) Hellqvist et al., Sweden [20]	To study whether people with Parkinson’s and care partners implemented the strategies of self-monitoring included in the self-management intervention ‘National Parkinson’s School’ (NPS) and use them in clinical encounters with healthcare professionals	10 people with Parkinson’s, 3 carers	Observations and interviews	Constant comparative analysis	Educational interventions can have an impact on participants’ own understanding of Parkinson’s disease and the abilities available to handle everyday life. Both participants and care partners valued the intervention. People with Parkinson’s disease and care partners reported having adopted the techniques of self-observation, introduced during the NPS, in their lives
(3) Kessler et al., Canada [21]	To develop an integrated approach to care in a tertiary Parkinson’s disease clinic by eliciting user experiences of self-management	13 people with Parkinson’s, 6 care givers	Interviews	Content analysis	People with Parkinson’s and their carers stressed the need for follow-up and coordination of care. They identified the need for provision of relevant information and assistance to access resources and on-going monitoring of their condition. Participants felt better informed and satisfied when professionals practiced open communication and shared decision-making
(4) Mulligan et al., New Zealand [22]	To evaluate an innovative self-management programme for people with Parkinson’s disease from the users’ perspectives	20 people with Parkinson’s, 3 spouses	Interviews	Thematic analysis	A programme of seminars that facilitated identification of strategies for everyday life with Parkinson’s was seen as useful in improving individuals with Parkinson’s and their support persons’ ability to be better at managing life with Parkinson’s. While there were benefits to the programme, such as improved knowledge, psychosocial benefits, and new and reinforced strategies, the content received mixed reactions, which could be explained by the participants’ individuality, their own journeys, and differing life stages
(5) Nunes and Fitzpatrick, Portugal [18]	To explore how people with Parkinson’s and carers collaborate in self-management, and ways in which they adapt everyday arrangements in order to create a meaningful life	9 people with Parkinson’s, 8 carers	Interviews and observations	Thematic analysis and grounded theory	People with Parkinson’s and their carers engage in numerous collaborations in order to build a life with quality. This joint objective is constantly redefined and renegotiated in face of the current context of Parkinson’s disease. Specific self-care activities patients and carers do together to self-manage their condition were explored, that show that collaborations happen independent of the level of autonomy of the person with Parkinson’s
(6) Pappa et al., USA [23]	To explore the potential influence of the Stanford Chronic Disease Self-Management Program (CDSMP) on social support in Parkinson’s disease	27 people with Parkinson’s, 6 care partners	Interviews	Thematic analysis	Participants felt that the workshop does not facilitate relationship building and expressed the desire for explicit encouragement and activities to do so. Although participation did not produce improvements in social support in this study, it did reveal some specific and individualized social support-related benefits to participants and their care partners. Many participants viewed utilization of social support as an indicator of decline and described avoiding the need for social support by adopting behaviours to maintain their independence