Background

Chronic non-malignant pain is commonly defined as pain that has lasted for six months or longer, is ongoing, is due to non-life threatening causes, does not respond to currently available treatment methods, and may continue for the remainder of the person's life.1 Chronic non-malignant pain is a common public health problem that demands individual self-management. Approximately 20% of all adults 16 years of age or older in developed countries experience chronic non-malignant pain; the incidence appears to be high in Denmark, with a prevalence of 26.8%, and the trend does not seem to be decreasing.2-5 It is common for patients to undergo a long diagnostic process, and once diagnosed, they have to wait for specialized treatment in pain clinics and centers due to the lack of resources, overall guidelines for the treatment and organization of the chronic pain area, as well as a general lack of political attention.6 Chronic non-malignant pain is a chronic illness and, due to issues such as functional impairment or fatigue, adjustments in family roles and tasks, the occupational environment and social activities are required by both the person with pain and their significant others because of the altered life circumstances.7

Rehabilitation programs for chronic non-malignant pain are often multidisciplinary in nature and are led by an interdisciplinary team consisting of physicians, nurses, physiotherapists, occupational therapists, social workers and psychologists or at least three of these professionals.1-3,8 Within multidisciplinary chronic pain management programs, variations of the patient-centered/biopsychosocial approach are commonly used. The rehabilitation program may be individual and/or group-based, comprising some of these elements: physical training, cognitive behavior therapy, mindfulness, relaxation training techniques, coping strategy training, work ability assessment and others.1-3,8

In recent years, the involvement of relatives in the rehabilitation process has been increasingly explored as a strategy to ensure that patients feel that they have support and assistance while self-managing chronic disease,9 stroke,10 cancer11,12 and pressure ulcers.13 Qualitative chronic pain studies based on semi-structured interviews with patients and significant others have found that involvement of significant others in rehabilitation programs may be essential in developing a shared understanding of the management of the condition for those suffering chronic pain, as well as for significant others and the family as a whole.8,14 More specifically, involvement of significant others is important for the process of adapting to the new life circumstances for both parties8,14 and adjusting to changed roles and responsibilities in the home, as well as celebrating achievements together during rehabilitation.8 It has also had positive effects on pain management, self-efficacy, level of functioning, stress and common understanding.2,3,8,15 However, despite significant others' interest in being involved, qualitative studies have found that in some cases, it may be difficult for significant others to be permitted or invited to be involved by the individuals with pain16 as well as by clinicians.17

The objective of this systematic review is to identify and synthesize evidence regarding the impact of significant others in the context of chronic pain programs and healthcare regimens for adult patients with chronic non-malignant pain in primary, secondary or tertiary healthcare settings from the perspective of chronic non-malignant pain patients, their significant others and health professionals. This is essential in order to provide constructive and meaningful guidance for the development of future rehabilitation programs incorporating significant others.

A preliminary search of the JBI Database of Systematic Reviews and Implementation Reports, Cochrane Library, MEDLINE, PROSPERO and DARE indicated that no systematic reviews had been conducted on this topic.

Inclusion criteria

Types of participants

The current review will consider studies that include adult patients aged 16 years or over that have been treated by health professionals in primary, secondary or tertiary healthcare settings for chronic (six months or longer) non-malignant pain due to either chronic pain syndrome, reflex dystrophy, complex regional pain syndrome, fibromyalgia, monostotic fibrous dysplasia, myositis, spondylosis, fracture, surgery, disk degeneration, back pain, headache, restless legs syndrome, osteoporosis, arnold-chiari syndrome, rheumatoid arthritis, amaurosis fugax or diabetic polyneuropathy.

In addition, studies addressing significant others' and health professionals' point of view related to this category of patients will be included. As chronic pain affects adults of all ages, there will be no upper age limit set. Pain that results from cancer is considered beyond the scope of this review because of its specific nature and management, which often differs from non-cancer-related causes of chronic pain. Furthermore, adults who have not been treated at primary, secondary or tertiary healthcare institutions for the purpose of remedying chronic non-malignant pain are also considered beyond the scope of this review.

The focus of this review is chronic non-malignant pain programs or interactions specific to healthcare institutions that provide treatment regimens for adults in order to discover the perceived role of significant others. The definition of significant others will be in accordance with Abbasi et al.18 and Lewandowski et al.19 and defined by Swift et al.8 as "people that an individual with chronic pain defines as their key source of social and psychological support".8^(p.48)

Phenomena of interest

The current review will consider studies that assess the perceptions of patients, significant others and health professionals regarding the role of significant others in programs focused on rehabilitation and learning to live with chronic non-malignant pain.

Context

In the context of this review, studies conducted in relation to primary, secondary or tertiary healthcare institutions in developed countries will be considered.

Types of studies

The current review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. The review will consider descriptive studies that report on qualitative data to assess perceptions regarding the role of significant others in chronic pain programs for chronic non-malignant pain patients in primary, secondary or tertiary healthcare settings (e.g. from interviews, focus groups, observations, diaries or other types of informative text).

Search strategy

The search strategy aims to retrieve both published and unpublished studies. A three-step search strategy will be utilized. An initial limited search of MEDLINE and CINAHL will be performed and followed by analysis of the text in the title and abstract, and examining the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken in all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, German, Danish, Swedish or Norwegian will be considered for inclusion in this review. Studies published up to the present date will be considered for inclusion in this review.

The databases to be searched include:

CINAHL

EMBASE

EricMEDLINE

PsycINFO

Science Citation Index

ScienceDirect

SVEmed.

The search for unpublished studies will include:

ProQuest Dissertations and Theses

Networked Digital Library of Theses and Dissertations

Open Grey

MedNar

PubMed "related articles" feature will be used to identify any additional studies identified by other sources.

Initial keywords to be used will be: chronic non-malignant pain, OR chronic non-cancer pain combined with chronic pain syndrome^*, chronic pain syndrome, reflex dystrophy, Complex Regional Pain Syndrome/CRPS, fibromyalgia, monostotic fibrous dysplasia, myositis, spondylosis, fracture, surgery, disk degeneration, back pain, headache, restless legs syndrome, osteoporosis, arnold-chiari syndrome, rheumatoid arthritis, amaurosis fugax and diabetic polyneuropathy. These will be combined with the terms chronic pain intervention, chronic pain program, rehabilitation, self-management, self-care, self-efficacy, coping, involvement, participation, role, "shared decision making, and combined with the terms: spouse-assisted, significant other, family, family support, spouse, carers, relatives, informal caregiver, next of kin, cohabitant, adult children, experience, perception, meaning, qualitative research, qualitative evaluation." Wildcards (^*) will be used to ensure all inflections of the word will be included in the search.

Assessment of methodological quality

Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity before inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

Data extraction

Qualitative data will be extracted from the papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes significant to the review question and specific objectives.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the synthesis of our findings and the generation of a set of statements that represent that assembly. This will involve collecting and compiling these findings to generate a set of statements that represent that aggregation. To do this, we will compile the findings (Level 1 findings) based on their quality and categorize these findings based on their similarity of meaning (Level 2 findings). These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings (Level 3 findings) that can be used as a basis for evidence-based practices. Where textual pooling is not possible, the findings will be presented in a narrative form.

Appendix I: Appraisal instruments

QARI appraisal instrument

Appendix II: Data extraction instruments

QARI data extraction instrument

References