Background

Parkinson's disease (PD) is a chronic progressive neurodegenerative disease. As the second most common neurological disease, PD affects more than 10 million people worldwide.1 In Denmark, more than 7000 people are living with PD, most of whom are 65 years of age or older.2,3 The main features of PD are tremor, bradykinesia, rigidity and at the later stage postural instability.4,5 Parkinson's disease is treated medically with L-dopa, but when the effect of L-dopa wears off, patients may experience episodes of ON-OFF phenomena, dyskinesia and involuntary movements.6-8 Similarly, as the disease progresses, non-motor symptoms may gradually appear. Common non-motor symptoms are neuropsychiatric symptoms, depression, anxiety, cognitive challenges, sleep disturbances and fatigue.5,9

These complex features affect daily living and the ability to engage in everyday activities. Thus, as the disease progresses, individuals living with PD may experience the disease as limiting on a daily basis, requiring the development of individual ways of coping with the disease to maintain an active everyday life.10-12 One profound feature is the unpredictability associated with living with advanced PD. Not knowing if and when you will be able to move around makes it difficult to plan ahead, ultimately leading to restrictions in the person's social life and isolation.12-14 Other symptoms described by individuals living with PD are loss of independence and control.11,14 Studies have demonstrated that living with PD may lead to a loss of self-esteem and inability to live in the present due to being insecure about the future.14-19

Quality of life (QoL) studies support the challenges described by individuals living with PD and have reported that PD influences QoL negatively. Loss of independence, fear of falling, gait difficulties and unpredictable physical abilities are predictors of poor QoL.20-23 In addition, individuals with PD are more likely to be depressed than people living with other chronic diseases.24 Thus, coping with the disease in everyday life is challenging.

Several studies addressing coping behaviors in individuals with PD using standardized coping questionnaires have found that the individual's coping behavior or strategy may be associated with personality, mental status and perceived QoL.24-26 Studies have shown that individuals with PD use both problem-focused and emotion-focused coping strategies, and the latter is associated with less constructive coping.23,27,28 Moreover, due to reduced coherence, persons living with PD seem to have poorer coping strategies than people living with other chronic illnesses.24

However, Hermanns et al. disputed the one-sided focus on symptom management and highlighted that coping with any disease is highly individualized. In their qualitative study, they presented a holistic/whole-body view, and identified and categorized inward or outward coping strategies, entailing numerous ways of dealing with the disease in everyday life.13 This observation is in line with coping as a multi-dimensional process with social, affective, cognitive and psychosocial dimensions.29

In the qualitative literature, individuals describe a profound wish to be independent and maintain daily life as they know it. They wish to live as normally as possible.14,26,30 Coping with PD has been described in several studies as living actively and having a positive outlook on life.12-14,31

An awareness of the importance of both multidisciplinary and individualized treatment for PD has increased in recent years, taking into account the complexity of the disease and acknowledging its cognitive, social, psychiatric and motor aspects.32-35 For healthcare professionals to make use of the important knowledge from qualitative research on individuals coping with PD in daily life, qualitative evidence from a growing number of research studies on living with PD needs to be assessed.36 Knowledge on how people living with PD cope with the challenges of an unpredictable body, fear of falling, reduced walking speed or any of the other features associated with the disease is important for planning individualized care and rehabilitation.

Therefore, the purpose of this review is to identify coping in daily life in individuals with PD. If possible, we wish to describe coping patterns and the features that can be used to uncover the needs of the individual undergoing PD treatment to support their efforts for managing daily life with the disease. A preliminary search in CINAHL, PubMed and the JBI Database of Systematic Reviews and Implementation Reports for existing systematic reviews on PD patients' coping behavior revealed no existing reviews on the topic.

Inclusion criteria

Types of participants

The current review will consider studies that include individuals who have been diagnosed with idiopathic PD by a specialized Neurologist. The review will consider studies that focus on how individuals cope or experience managing everyday life with PD in a home setting (also including nursing homes). All studies including persons with a known diagnosis of PD may be included, with no regard to duration of the disease, age, gender or ethnicity. Studies including a typical Parkinsonian or Parkinson-plus syndromes and studies including persons in hospital will be excluded unless it is possible to identify and separate the results.

Phenomena of interest

The current review will consider studies that describe coping with PD or studies that explore individuals' experiences and way of managing daily life with PD to include all evidence that will unfold all aspects of coping or managing daily life with PD.

Context

The current review will consider studies that describe managing or coping with daily life with PD in individuals living at home. This includes nursing homes but excludes inpatients as the phenomenon of interest is coping in daily life.

Types of studies

The current review will consider interpretive studies that draw on the experiences of individuals with PD including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

In the absence of research studies, other text such as opinion papers and reports will be considered.

Search strategy

The search strategy aims to find both published and unpublished studies. As there is no justification for including a timeframe for investigating the experience of managing daily life with PD, no timeframe is included. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, Danish, Swedish and Norwegian will be considered for inclusion in this review.

The databases to be searched include:

CINAHL, MEDLINE, Swemed+, PsycINFO and Scopus+

The search for unpublished studies will include:

Mednar, parkinson.org, Google Scholar and OpenGrey

Initial keywords to be used will be:

Parkinson's disease, coping/adaption, behavior, strategies, daily life, lived experience and activities of daily living

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review. The quality assessment will use the standardized critical appraisal instruments from the JBI Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I) or JBI Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI), if applicable. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

Data extraction

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). These data extracted will include specific details about the phenomena of interest, participants, study methods, analysis and author conclusions of significance to the review question. Data from opinion and text will be extracted using the JBI-NOTARI data extraction instrument and will include details of the phenomena of interest, the focus on the patient perspective, and the logic and analytical basis for the text/opinion.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. Expert opinions and text will be synthesized using JBI-NOTARI. For all data, this will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form. In the case of any questions regarding any of the studies, the author of the paper will be contacted.

Appendix I: Appraisal instruments

QARI appraisal instrument

NOTARI appraisal instrument

Appendix II: Data extraction instruments

QARI data extraction instrument

NOTARI data extraction instrument

References