Abstract
Living with chronic ulcers can be burdensome and restrictive, with regard to not only physical and psychological but also social well‐being. This review aims to analyse social participation in patients with chronic wounds and to compare results across different wound types. A search string was applied in several electronic databases. Results were screened according to predefined inclusion and exclusion criteria. Data of eligible articles were extracted and synthesised narratively. The search revealed 42 eligible publications. Only minor differences across different ulcer types could be detected. Overall, family members were the main social contacts for patients; they often provided wound care and emotional support. Patients had few non‐family relations, but those existing were often very close. Patients felt guilty as their condition imposed burden on family and friends, as well. A close relationship with nurses was described. Restrictions were caused by direct and indirect consequences of the wound. Overall, social support and social connections were reduced in wound patients. Inconsistent results were found regarding social isolation. In summary, people with chronic wounds experience impairments in all aspects of social participation. Therefore, social participation deserves increased attention in routine care both as a trigger of burden and as an outcome of therapy.
Keywords: social isolation, social participation, social support, ulcer, wounds and injuries
1. INTRODUCTION
Living with chronic wounds can be burdensome and can cause various restrictions in patients' daily life. A wound becomes chronic when it fails to show sufficient healing in a timely manner. 1 The exact timeframe after which a wound is considered chronic ranges from 4 weeks to 3 months. 2 , 3 Besides the duration of the wound, the existence of an underlying condition is an indicator to define a wound as chronic. 4 Chronic wounds can have different underlying aetiologies, such as venous insufficiency, arterial disease, diabetes, or constant pressure. 5 Worldwide, the pooled total prevalence of chronic wounds is 1.67 per 1,000 people 6 with especially high prevalence in older adults. 7 Age also negatively effects healing and recurrence as well as treatment adherence. 8 , 9 People with chronic wounds often have reduced health‐related quality of life (HRQoL) with regard to various dimensions. 10 , 11 , 12 Patients may not only experience wound‐specific burden, such as exudate, odour, and pain but also more general impairments, such as depressions, anxiety, and sleep disturbances. 13 , 14 Furthermore, many people with chronic wounds are financially burdened and restricted in their activities, 15 all of which can result in impairments in patients' social participation.
Social participation and its impact on health have been described by Douglas et al. 16 They define different forms of social participation:
Social connections: ties with people in the individual's intimate or extended environment.
Informal social participation: activities with others being pursued by the individual for own enjoyment by taking advantage of social interaction.
Volunteering: activities in organisations (eg, community, church) being pursued by the individual for others' benefit.
They suggested that the positive effects of these forms of social participation on the individual's health are mediated by:
Social support: help and assistance for the individual when it is needed.
Social cohesion: the individual's sense of trust and reciprocity in the community.
This model is used for this review because of its distinct and clear definition of different aspects of social participation. Other authors may use different names for the same aspects of social support. 17 , 18 , 19 , 20 , 21 Another reason for using this model is the fact that it was established in the context of older adults, which is an important target group with regard to chronic wounds.
Social participation can be beneficial in two ways: by buffering specific stressors in stressful episodes or by having a constant beneficial impact on health irrespectively of the presence of stressors. 22 According to Berkman, 23 social support can improve health by enabling the individual to experience a sense of belonging and intimacy. However, negative consequences of social support might occur for both providers of support and patients. From the provider's perspective, providing informal care can be burdensome and cause adverse health outcomes. 24 From the patient's perspective, extensive support can foster patients' dependency. 25 Especially in the absence of family and friends, patients may become dependent from formal care providers. Therefore, it has been suggested that people with chronic wounds may hinder their wounds from healing or induce recurrence of wounds in order to preserve the contact to their nurses. This secondary gain of illness is called social ulcer. 26 This phenomenon is of rather anecdotal evidence 27 though secondary benefits from illness may occur. Beyond that, social participation not only influences health, but the health status also influences social participation. 27 , 28 Accordingly, experiencing pain, having limited mobility, or feeling shame because of wound odour and wound exudate leads to patients' rejection or inability to socially participate. 29 , 30 , 31 , 32
The issue of social participation requires special attention in people with chronic wounds. This is because people of higher age have more chronic wounds and less wound closure, 7 , 8 , 33 and also the highest risk for reduced social participation up to social isolation. 34
Previous reviews have covered aspects of social participation in people with chronic wounds. However, they consider only specific dimensions of, or aspects related to, social participation, such as social impacts, 35 , 36 , 37 psychosocial effects, 38 experiences of living with a chronic ulcer, 39 , 40 , 41 or patient‐centred care. 42 Social participation as described in the model presented earlier 16 is a complex construct having great impact on the patients' well‐being and should thus be considered accordingly in order to achieve a comprehensive understanding of the impacts of chronic wounds on patients' life. Additionally, the previous reviews focused on one specific type of chronic wounds each, mostly leg ulcers 36 , 38 , 39 and venous leg ulcers, 27 , 37 , 40 , 41 or did not distinguish between different types of chronic wounds. 42 Accordingly, no conclusion can be drawn whether social participation differs regarding the underlying aetiology. Although some consequences of chronic wounds are similar across wound types (eg, frequent wound dressings, restrictions in choice of clothes 42 ), others differ with regard to the underlying aetiology (eg, pain severity 43 ). Revealing potential differences in social participation in these patients could inform future research and clinical decision‐making.
Therefore, the present review aims to describe the state of research on social participation in patients with chronic wounds, taking the different dimensions of social participation into account, and to compare results across different wound types.
2. MATERIALS AND METHODS
The conduct of this systematic review has been registered at PROSPERO (CRD42020157433). We searched the electronic literature databases MEDLINE (PubMed), Cochrane Library, Web of Science, PsychINFO, and CINAHL. The search string combined keywords related to chronic wounds and social participation. Keywords on chronic wounds were based on search strings used by other systematic reviews on this indication 42 , 44 , 45 , 46 and were discussed with a dermatologist (NK). Keywords on social participation were based on concepts covered in the model of social participation 16 , 42 and systematic reviews about aspects of social participation. 42 , 47 , 48 , 49 In collaboration with a librarian, the search string was finalised to be applicable in various databases. The search string as used in MEDLINE (PubMed) is displayed in Appendix 1.
All search results were extracted, and duplicates were removed. The titles and abstracts of the remaining records were screened by two researchers (TMK and VA) applying predefined exclusion criteria. Full texts were then assessed accordingly. Exclusion criteria were (a) studying non‐dermatological ulcers, (b) studying acute ulcers, (c) studying tropical ulcers, (d) social participation not being a major outcome of the study, (e) specific article types (ie, study protocols, case studies, no data collection), and (f) article language being neither English nor German. Literature reviews were not included, but articles cited by the reviews were screened related to title and reported content. In a last step, reference lists of eligible articles were screened for further relevant articles.
After identification of all eligible articles, data were extracted including information on the article, the study, sample characteristics, wound type, and the perspective on and results regarding social participation. Wound types were stratified by articles reporting on patients with any form of leg ulcers (LU), venous leg ulcers (VLU), arterial leg ulcers (ALU), mixed leg ulcers (MLU), diabetic foot ulcers (DFU), pressure ulcers (PU), ulcers caused by other diseases, mixed samples of different types, and unspecified ulcer types. The perspective on social participation was categorised by articles treating social participation as a distinct construct, as a subdomain of HRQoL, or as aspect of another construct. Even though articles used different terminologies for the aspects of social participation covered here, their results were assigned to categories as defined by the model of Douglas et al, 16 namely social support, social connections, informal social participation, volunteering, and social cohesion. At a later stage, informal social participation and volunteering were combined to informal/formal social participation because volunteering was seldom reported and, if so, only jointly with activities of informal social participation. Due to the heterogeneity of included studies, the large number of qualitative articles, and the variety of instruments used for assessing aspects of social participation, data were synthesised narratively.
The quality of all included studies was evaluated by applying checklists of the Critical Appraisal Skills Programme (CASP). These checklists exist for a variety of study designs. As no CASP checklist exists for cross‐sectional studies, the CASP checklist for case‐control studies was adapted by excluding criteria about the control group (CASP criteria 4 and 6a). Studies with a mixed methods design were assessed using the CASP checklist for the corresponding quantitative design. The number of criteria in each CASP checklist ranged from 10 (qualitative, cross‐sectional) to 13 (cohort). The evaluation for most criteria was three‐stepped (yes/can't tell/no), except for criterion 9 in cross‐sectional studies (“Do you believe the results?”: yes/no).
3. RESULTS
Literature research in electronic databases identified 4,747 articles after removal of duplicates. After title and abstract screening, 96 articles remained. Full‐text assessment identified 43 relevant articles, of which 32 were original studies and 11 were reviews. Reference screening was conducted accordingly. This process resulted in 42 eligible articles in total (Figure 1).
FIGURE 1.
Flow chart of systematic review process
3.1. Characteristics of included studies
The 42 articles included in this review present results of 40 studies and were published between 1986 and 2019 (Table 1). Of these, 24 were qualitative studies. 25 , 30 , 31 , 32 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 Of the quantitative studies, 13 were cross‐sectional 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 (of which six had a comparative approach, eg, ulcer vs non‐ulcer participants) and two were cohort studies. 83 , 84 Three studies had a mixed‐methods design. 26 , 85 , 86 The number of patients with chronic wounds included ranged from 3 65 to 758. 80 , 81 About half of the articles (n = 20) reported about studies conducted exclusively in the United Kingdom 26 , 30 , 50 , 51 , 53 , 56 , 57 , 59 , 62 , 64 , 65 , 69 , 75 , 76 , 80 , 81 , 83 , 84 , 85 , 86 and seven articles about studies conducted in Brazil. 25 , 31 , 52 , 53 , 54 , 55 , 58 , 61 , 64 , 65 , 70 , 71 , 77 , 79 The other articles reported studies from different countries. Results included 12 articles (21.8%) on patients with VLU, 25 , 50 , 54 , 55 , 59 , 62 , 63 , 66 , 69 , 76 , 82 , 86 9 articles (16.4%) on patients with LU, 26 , 60 , 72 , 73 , 74 , 75 , 78 , 80 , 81 8 articles (14.5%) on patients with DFU, 53 , 61 , 64 , 65 , 70 , 71 , 77 , 79 4 articles (7.3%) on patients with PU, 30 , 57 , 67 , 68 and 3 articles (5.5%) on patients with ulcers caused by other diseases: rheumatoid arthritis, 56 epidermolysis bullosa, 51 and sickle anaemia. 31 Four articles (7.3%) investigated patients with different wound types, 52 , 58 , 84 , 85 and one article (1.8%) did not specify the wound types. 32 Most articles report on studies recruiting in an outpatient clinic or by district nurses; seven studies did not specify the setting of recruitment. 53 , 65 , 67 , 69 , 72 , 74 , 77 , 79 One study each recruited patients exclusively in an inpatient clinic, 73 in both inpatient and outpatient clinics, 32 or in a Leg Club. 85 Leg Clubs have been developed in the United Kingdom and are meetings in which community‐based care is provided in non‐medical settings. Here, patients can drop in without appointment for being treated by a nurse and socialise with other patients. 87 Leg Clubs have also been founded in Australia and Germany. 88
TABLE 1.
Details on the articles included in this study
Authors | Year | Country | Study design | Sample size (n) | Age (years) | Ulcer types | Perspective on SP | SP Instrument |
---|---|---|---|---|---|---|---|---|
Adni et al 51 | 2012 | United Kingdom | Qualitative: interpretative phenomenology | 6 | x¯ = 39.3 ± 17.4, range: 24 to 67 | Epidermolysis bullosa ulcer | Aspect of lived experience | — |
Akca et al 70 | 2008 | Turkey | Quantitative: comparative cross‐sectional | 200 (DFU: 100, controls: 100) | DFU: x¯ = 61.84 ± 9.34; controls: x¯ = 55.22 ± 3.77 | DFU | Aspect of psychosocial adjustment | PAIS‐SR, Ways of Coping instrument |
Bandeira et al 52 | 2018 | Brazil | Qualitative: social network analysis | 9 | x¯ = 56, range: 37 to 79 | VLU, ALU, MLU, PU, unspecified ulcer | Distinct construct | Map construction indicators |
Bradbury and Price 65 | 2011 | United Kingdom | Qualitative: not specified | 3 | Range: 71 to 86 | DFU | Subdomain of HRQoL | — |
Brod 53 | 1998 | United Kingdom | Qualitative: not specified | 14 | x¯ = 57, range: 39 to 83 | DFU | Subdomain of HRQoL | — |
Brown 50 | 2005 | United Kingdom | Qualitative: not specified | 8 | n/a | VLU | Distinct construct | — |
Byrne and Kelly 66 | 2010 | Ireland | Qualitative: Heideggerian hermeneutic phenomenology | 12 | n/a | VLU | Aspect of lived experience | — |
Charles 83 | 2010 | United Kingdom | Quantitative: cohort | 65 | x¯ = 72, range: 30 to 95 | VLU | Distinct construct | SSQ‐SF |
da Silva et al 25 | 2014 | Brazil | Qualitative: not specified | 14 | Range: 47 to 79 | VLU | Aspect of lived experience | — |
da Silva et al 54 | 2015 | Brazil | Qualitative: not specified | 14 | Range: 47 to 79 | VLU | Aspect of lived experience | — |
da Silva et al 55 | 2013 | Brazil | Qualitative: social phenomenology | 8 | Range: 40 to 81 | VLU | Aspect of daily life | — |
Figueira et al 71 | 2012 | Brazil | Quantitative: cross‐sectional | 30 | x¯ = 57, range: 34 to 85 | DFU | Distinct construct | Social support network inventory |
Firth et al 56 | 2011 | United Kingdom | Qualitative: not specified | 23 | x¯ = 69 ± 10, range: 45 to 88 | Rheumatoid arthritis foot ulcer | Subdomain of HRQoL | — |
Flett et al 72 | 1994 | New Zealand | Quantitative: comparative cross‐sectional | 28 (LU: 14, controls: 14) | Majority >60 | LU | Aspect of psychosocial aspects | UCLA Loneliness Scale; Closeness of Relationship Scale; Satisfaction with Relationship Scale |
Fox 57 | 2002 | United Kingdom | Qualitative: phenomenology | 5 | Range: 31 to 64 | PU | Aspect of patients' experience | ‐ |
Franks and Moffat* 80 | 1998 | United Kingdom | Quantitative: cross‐sectional | 758 | x¯ = 74.6 (women: x¯ = 76.9 ± 10.5; men: x¯ = 70.5 ± 12.8) | LU | Subdomain of HRQoL | NHP |
Franks and Moffat* 81 | 2006 | United Kingdom | Quantitative: cross‐sectional | 758 | x¯ = 74.6 | LU | Subdomain of HRQoL | NHP |
Garcia et al 58 | 2018 | Brazil | Qualitative: not specified | 10 | Range: 32 to 70 | VLU, DFU | Distinct construct | — |
Hareendran et al 86 | 2005 | United Kingdom | Mixed methods: cross‐sectional | 38 | x¯ = 71.45 ± 12.76, range: 46 to 91 | VLU | Subdomain of HRQoL | — |
Hopkins 59 | 2004 | United Kingdom | Qualitative: hermeneutic phenomenology | 8 | Median: 75, range: 47 to 78 | VLU | Aspect of lived experience | — |
Hopkins et al 67 | 2006 | Belgium and United Kingdom | Qualitative: Heideggerian phenomenology | 8 | n/a | PU | Aspect of lived experience | — |
Hyde et al 60 | 1999 | Australia | Qualitative: not specified | 13 | Range: 70 to 93 | LU | Aspect of lived experience | — |
Jackson et al 30 | 2018 | United Kingdom | Qualitative: not specified | 12 | Range: 31 to 92 | PU | Aspect of lived experience | — |
Keeling et al 84 | 1997 | United Kingdom | Quantitative: cohort | 30 (LU: 15, DFU:15) | LU: x¯ = 70.4, DFU: x¯ = 63.6 | LU, DFU | Distinct construct | ISSB |
Kouris et al† 73 | 2016 (a) | Greece | Quantitative: comparative cross‐sectional | 204 (LU:102, controls:102) | Cases: x¯ = 62.29 ± 13.41, range: 34 to 88 | LU | Distinct construct | UCLA Loneliness Scale (Version 3) |
Kouris et al† 74 | 2016 (b) | Greece | Quantitative: comparative cross‐sectional | 240 (LU: 80, psoriasis: 80, controls: 80) | LU: x¯ = 52.34 ± 11.77; psoriasis: x¯ = 48.23 ± 11.47; controls: x¯ = 51.56 ± 11.31 | LU | Distinct construct | UCLA Loneliness Scale (Version 3) |
Lacerda et al 31 | 2014 | Brazil | Qualitative: not specified | 5 | Range: 27 to 35 | Sickle anaemia ulcer | Aspect of lived experience | — |
Langemo et al 68 | 2000 | United States | Qualitative: phenomenology | 8 | x¯ = 35.75, range: 27 to 52 | PU | Aspect of lived experience | — |
Moffat et al 75 | 2009 | United Kingdom | Quantitative: comparative cross‐sectional | 190 (LU: 95, controls: 95) | 59% >75 | LU | Distinct construct | NHP; MOS‐SSS; COPE |
Morgan et al 76 | 2004 | United Kingdom | Quantitative: cross‐sectional | 74 | x¯ = 73.5, range: 63.5 to 81.3 | VLU | Distinct construct | SSQ |
Neil and Munjas 32 | 2000 | United States | Qualitative: Heideggerian hermeneutic phenomenology | 10 | Unspecified ulcer | Aspect of lived experience | — | |
Palaya et al 61 | 2018 | Australia | Qualitative: hermeneutic phenomenology | 8 | Range: 48 to 74 | DFU | Distinct construct | — |
Palfreyman et al 62 | 2007 | United Kingdom | Qualitative: framework analysis | 19 (IVDU‐history:7, no IVDU‐history: 12) | Range: 27 to 79 (IVDU‐history: 27 to 41, non‐IVDU‐history: 44 to 79) | VLU | Subdomain of HRQoL | — |
Perini et al 63 | 2006 | Germany | Qualitative: not specified | 12 | x¯ = 77, range: 69 to 86 | VLU | Aspect of caring | — |
Pieper et al 82 | 2000 | United States | Quantitative: cross‐sectional | 32 | x¯ = 44.6 ± 4.3, range: 37 to 54 | VLU | Aspect of psychosocial adjustment | PAIS‐SR, Ways of Coping instrument |
Rich and McLachian 69 | 2003 | United Kingdom | Qualitative: Heideggerian hermeneutic phenomenology | 4 | x¯ = 77, range: 55 to 89 | VLU | Aspect of lived experience | — |
Searle et al 64 | 2005 | United Kingdom | Qualitative: constant comparison approach | 13 | x¯ = 57.3, range: 45 to 66 | DFU | Aspect of lived experience | — |
Septiana and Gayatri 77 | 2019 | Indonesia | Quantitative: cross‐sectional | 69 | x¯ = 55.78 ± 8.02, range: 40 to 71 | DFU | Distinct construct | RAND Social Health Battery |
Upton et al 85 | 2015 | United Kingdom | Mixed methods: cohort | 49 | x¯ = 75.34 ± 10.31, range: 50 to 94 | VLU, DFU. unspecified ulcer | Distinct construct | 5‐point Likert scale single item on social isolation |
Wise 26 | 1986 | United Kingdom | Mixed methods: cross‐sectional | 10 | Retirement age | LU | Distinct construct | Townsend's Scale |
Wissing et al 78 | 2002 | Sweden | Quantitative: comparative cross‐sectional | 144 (LU: 70 controls: 74) | Ulcer men: x¯ = 79 ± 7, ulcer women: x¯ = 80 ± 3, controls men: x¯ = 80 ± 6.5, controls women: x¯ = 80 ± 5.4 | LU | Aspect of life situation | PGC MAI |
Yildiz and Asti 79 | 2015 | Turkey | Quantitative: cross‐sectional | 128 | 10.2%: 18 to 30; 81.3%: 31 to 50; 8.6%: >50 | DFU | Distinct construct | MSPSS |
Note: */†, articles reporting the same study.
Abbreviations: x¯, mean; ALU, arterial leg ulcers; COPE, multidimensional measure of strategies used for coping; DFU, diabetic foot ulcers; HRQoL, health‐related quality of life; ISSB, Inventory of Socially Supportive Behaviour; IVDU, intra‐venous drug user; LU, any leg ulcers; MLU, mixed leg ulcers; PU, pressure ulcers; MOS‐SSS, Medical Outcomes Study Social Support Survey; MSPSS, Multidimensional Scale of Perceived Social Support; NHP, Nottingham Health Profile; PAIS‐SR, Psychosocial Adjustment to Illness Scale—Self‐Report; PGC‐MAI, Philadelphia Geriatric Center Multilevel Assessment Instrument; SSQ, Social Support Questionnaire; SSQ‐SF, Social Support Questionnaire short form; UCLA, University of California, Los Angeles; VLU, venous leg ulcers.
In 16 articles, aspects of social participation were treated as distinct constructs, 25 , 26 , 50 , 52 , 58 , 61 , 71 , 73 , 74 , 75 , 76 , 77 , 79 , 83 , 84 , 85 in 7 as subdomains of HRQoL, 53 , 56 , 62 , 65 , 80 , 81 , 86 and in 19 they were described in the scope of another construct, 30 , 31 , 32 , 51 , 54 , 55 , 57 , 59 , 60 , 63 , 64 , 66 , 67 , 68 , 69 , 70 , 72 , 78 , 82 such as lived experience or psychosocial adjustment. In quantitative studies, aspects of social support were measured with a number of different questionnaires (eg, UCLA Loneliness Scale, 89 Inventory of Socially Supportive Behaviour, 90 and Medical Outcomes Study Social Support Survey 91 ).
3.2. Quality assessment
In using different CASP checklists for the quality assessment, we acknowledged the difference in study designs. The assessment revealed mixed quality of the included articles (Table A1). In particular, quantitative studies did not fulfil or only partly fulfilled some of the CASP criteria. The number of fulfilled criteria ranged from one to eight of 10 across the cross‐sectional and from five to six of 13 across cohort studies. Most of the quantitative studies lacked generalisability due to small sample sizes or low quality of study design. Within the qualitative studies, many fulfilled the majority of the 10 criteria, whereas others lacked the fulfilment of numerous criteria. The number of fulfilled criteria ranged from one to nine in qualitative studies. Most of the qualitative studies lacked a discussion of the relationship between researcher and participants.
3.3. Social support
In 20 studies including patients with VLU, 25 , 54 , 63 , 66 , 76 , 83 LU, 75 DFU, 53 , 61 , 64 , 65 , 71 , 79 PU, 57 , 67 , 68 other disease‐caused ulcers, 51 and different ulcer types, 52 , 58 , 84 aspects of social support were reported (Table 2). Patients' experiences were similar across these ulcer types. Family members represented the main resource for social support, providing direct and indirect wound care as well as emotional support. Friends, neighbours, and colleagues most often provided emotional support, social interaction, and transport. 31 , 51 , 52 , 53 , 54 , 55 , 57 , 58 , 63 , 65 , 66 , 67 , 68 , 71 Despite these overall positive impacts of family and friends, results varied across individuals and sometimes patients were not able to receive the support they wished for 52 or patients deliberately avoided asking for help in order not to burden others. 53
TABLE 2.
Information on social support as reported by studies differentiated by ulcer type
Social support (n = 20) | ||||||
---|---|---|---|---|---|---|
Types | Venous leg ulcer | Any leg ulcer | Diabetic foot ulcer | Pressure ulcer | Other disease‐caused ulcer | Mixed sample |
Studies | n = 6 25 , 54 , 63 , 66 , 76 , 83 | n = 1 75 | n = 6 53 , 61 , 64 , 65 , 71 , 79 | n = 3 57 , 67 , 68 | n = 1 51 | n = 3 52 , 58 , 84 |
General aspects |
|
n.a. |
|
n.a. | n.a. |
|
Informal providers |
Family (esp. those of closest relations, daughter, son, daughter‐in‐law, granddaughter):
Friends/neighbours:
Colleagues:
|
n.a. |
Family (esp. spouse/partner, daughter):
Main source of social support:
|
Family (esp. spouse/partner, child):
Friends:
|
Family (esp. wife, family carer):
|
Family (esp. family nucleus, wife):
|
Formal providers |
|
n.a. |
Main source of social support:
|
n.a. |
|
n.a. |
Group differences |
Available support:
Satisfaction with support:
|
Total social support:
Forms of social support:
Social coping strategies:
|
Perceived social support:
Total, family, significant other support:
Total, family, friends, significant other support:
|
n.a. | n.a. |
Received support:
|
Abbreviations: BMI, body mass index; GP, general practitioner; n, sample size; n.a., no information available.
3.4. Social connections
In 25 studies, in which all ulcer types were represented, 26 , 30 , 31 , 32 , 50 , 52 , 55 , 59 , 60 , 62 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 77 , 78 , 80 , 81 , 82 , 85 aspects of social connections were reported (Table 3). No considerable differences between ulcer types were found. The number of people with whom patients had social connections varied within studies. Besides psychological aspects (eg, stress, worries) being negatively correlated with social connections, wound odour was the only clinical variable indicating fewer social connections. 77 , 85 The number of social connections was also lower in comparison with healthy controls, 75 , 78 particularly regarding extra‐family relations. Restrictions in sexuality and finding a partner were also reported. 55 , 62 , 70
TABLE 3.
Information on social connections as reported by studies differentiated by ulcer type
Social connections (n = 25) | |||||||
---|---|---|---|---|---|---|---|
Type | Venous leg ulcer | Any leg ulcer | Diabetic foot ulcer | Pressure ulcer | Other disease‐caused ulcer | Unspecified ulcer | Mixed sample |
Studies | n = 6 50 , 55 , 59 , 62 , 69 , 82 | n = 9 26 , 60 , 72 , 73 , 74 , 75 , 80 , 81 | n = 3 70 , 71 , 77 | n = 3 30 , 57 , 68 | n = 1 31 | n = 1 32 | n = 2 52 , 85 |
Frequency |
|
|
|
n.a. | n.a. |
|
|
Experience |
|
|
n.a. |
|
|
|
|
Causes |
|
|
n.a. |
|
|
|
n.a. |
Group differences |
Social isolation:
|
Number of contacts:
Social interaction:
Closeness of and satisfaction with relationships:
Social isolation and loneliness:
|
Social interaction:
Adjustment to illness:
|
Social isolation: Greater isolation for patients being hospitalised at distance from home |
n.a. | n.a. |
Perceived social situation:
|
Abbreviations: BMI, body mass index; IVDU, intravenous drug users; n, sample size; n.a., no information available.
Both direct consequences of chronic wounds (eg, being immobile, being bed‐bound, sitting in a wheelchair, having pain when walking) 30 , 32 , 50 , 57 , 60 , 68 and indirect consequences (eg, fearing that others could smell wound odour or see leakage) 31 , 32 , 50 , 59 were associated with social isolation, which is an extreme manifestation of reduced social connections. However, results were inconsistent as to whether social isolation is significantly more frequent in patients with chronic wounds than in controls. 72 , 74 One study found upward deviations from norm values across all patients, with larger deviations from the respective norm value in men and younger patients. 80
3.5. Informal/formal social participation
Across all types of chronic wounds, 17 studies 25 , 30 , 32 , 51 , 53 , 55 , 56 , 58 , 59 , 62 , 63 , 65 , 66 , 67 , 78 , 85 , 86 report restrictions with regard to work life, social activities, leisure activities, everyday activities, and travelling (Table 4). One study comparing ulcer patients and controls found significant differences in the frequency of activity cessation. 78 Causes for restrictions in activities were similar across ulcer types, such as immobility caused by the ulcer, inability to wear appropriate clothing, and restricted time due to increased effort put in wound care or appointments with formal care providers. 30 , 53 , 54 , 56 , 58 , 59 , 62 , 63 , 67 , 86 Also, psychological impacts of the wound hindered patients to participate socially as patients were ashamed, were not able to enjoy formerly enjoyed activities, or behaved more introverted because of their ulcer. 30 , 53 , 56 , 58 , 59 , 62 , 66 , 86 These restrictions could lead to financial problems, diminishing social networks or feelings of guilt because the patients' burden led to restrictions for others. Nevertheless, some patients reported to maintain their active social life or their desk jobs. 56 , 59 The only reported newly uptaken activities were those offered by a Leg Club. 85
TABLE 4.
Information on (informal) social participation as reported by studies differentiated by ulcer type
(Informal) social participation (n = 17) | |||||||
---|---|---|---|---|---|---|---|
Type | Venous leg ulcer | Leg ulcer (unspecified) | Diabetic foot ulcer | Pressure ulcer | Other disease‐caused ulcer | Unspecified ulcer | Mixed sample |
Studies | n = 7 54 , 55 , 59 , 62 , 63 , 66 , 86 | n = 1 78 | n = 2 53 , 65 | n = 2 30 , 67 | n = 2 51 , 56 | n = 1 32 | n = 2 58 , 85 |
Restricted activities |
|
|
|
|
|
|
|
Continued/uptaken activities |
|
n.a. | n.a. | n.a. |
|
n.a. |
|
Causes |
|
n.a. |
|
|
|
n.a. | n.a. |
Impact |
|
n.a. |
|
|
n.a. | n.a. |
|
Abbreviations: n, sample size; n.a., no information available.
3.6. Social cohesion
Eleven studies reported on social cohesion (Table 5) including patients with VLU, 59 , 63 , 86 DFU, 53 , 65 PU, 67 other disease‐caused ulcers, 31 , 51 and different ulcer types. 52 , 58 , 85 In all ulcer types, patients reported feelings of guilt, anxiety, or sadness because of the burden that they felt was loaded onto family members or friends due to the patients' restrictions. Patients stated that their personal tension was transferred to the family, that they avoided talking to others about their issues, or that personal bonds became fragile. 31 , 52 , 53 , 58 , 65 , 67 , 86 However, several studies also highlight patients' strong relationships with both family members and friends, which help managing self‐care and having a safe environment with non‐judgemental people around. 51 , 58 , 63 Moreover, VLU patients also describe a strong relationship with their nurses; however, this was only the case when there was consistency in the person providing care. 59
TABLE 5.
Information on social cohesion as reported by studies differentiated by ulcer type
Social cohesion (n = 11) | |||||
---|---|---|---|---|---|
Type | Venous leg ulcer | Diabetic foot ulcer | Pressure ulcer | Other disease‐caused ulcer | Mixed sample |
Studies | n = 3 59 , 63 , 86 | n = 2 53 , 65 | n = 1 67 | n = 2 31 , 51 | n = 3 52 , 58 , 85 |
Relationship with family and friends |
|
n.a. | n.a. |
|
|
Impact on family and friends |
|
|
|
|
n.a. |
Relationship with formal carers |
|
n.a. | n.a. | n.a. | n.a. |
Abbreviations: n, sample size; n.a., no information available.
4. DISCUSSION
The aim of this systematic review was to analyse social participation in patients with chronic wounds and to compare results across different ulcer types. For this, the model of the effect of social participation on health 16 was used, and thus, results assigned to social support, social connections, informal/formal social participation, and social cohesion. Most of the included studies focused on social connections and social support. The most frequently studied patient groups were VLU patients, followed by patients with any LU (probably also including a large share of patients with VLU), DFU, and PU. This corresponds to the actual prevalence of wound types with most chronic wounds being chronic leg ulcers, 6 and the greatest share of chronic wounds being venous aetiology. 92
This review reveals that no considerable differences have been found in the social participation of patients with different types of ulcers. Consistent results across the studies were that the main source of social contact was the family, who also provided wound care and relieved the patients from housework activities. Relationships with family members and friends were often close, but patients also feared to bother others. Patients often had to quit or rearrange previously conducted activities and only few reported newly uptaken activities. Accordingly, direct and indirect consequences of the chronic wound led to reduced social interactions and partly even caused social isolation. An inconsistent picture was seen regarding which sociodemographic, clinical, or psychological characteristics are associated with patients' social participation.
The importance of family members and spouses found in the included studies aligns with previous findings stating that family members and spouses are important caregivers and care coordinators for patients with various diseases (eg, stroke, musculosketeal diseases, depression). 93 In their role as caregivers, relatives can facilitate patient‐centred care. 94 However, the great share of care provided by informal caregivers can also lead to high burden for relatives. 95 Therefore, it is important not to overlook this specific target group and to provide interventions to provide help, which has already shown positive effects for informal caregivers of patients with dementia and cancer. 96
The fact that only a small number of extrafamilial relationships was detected, but that those existing were often close and of non‐judgemental nature, emphasises the importance to study not only the quantity of social contacts. Accordingly, Victor et al 97 reasoned that in the general population of older adults, the number of social contacts alone does not explain feelings of loneliness but that the individuals' experiences and understandings need to be investigated qualitatively. Despite the close relationships reported in the articles, some patients expressed a tendency to avoid bothering others. Together with direct consequences of the wound (eg, exudate, odour, pain, immobility, time‐consuming treatment), this may lead to restrictions in various activities as well as withdrawal from social interaction, and hence promote the risk of self‐isolation and feelings of loneliness.
Besides family and friends, the unique relationship with professional healthcare providers (especially nurses) needs to be acknowledged. This relationship can go beyond the provision of wound care and become a resource of emotional support. For such a relationship to develop, it needs continuity in care and a collaborative relation between patient and provider. Additionally, continuity in and confidence with professional care may prevent patients from terminating professional care and from starting self‐treatment. One third of self‐treating wound patients were found to do so 98 (eg, for reasons of unavailability of the familiar care provider, differing ideas about the treatment across different care providers, inconvenience of professional care). Other reasons for self‐treatment were the wish to be independent, the wish to conduct treatment at the desired time, or the costs caused by professional care. At the same time, this study 98 found that few patients were educated or trained for self‐treatment, and that debridement was rarely conducted in self‐performed wound care. This calls for a well‐designed educational programme for self‐treating patients. The same accounts for informal caregivers, who often bear a large share of the wound care, but may still lack important knowledge and skills required for providing safe care. 99 On the contrary, a close relation to the nurse may also lead to the phenomenon of social ulcers. 26 This describes the patient's wish of the wound not to heal in order to maintain the social contact with the care provider and is probably particularly relevant for the patients with the lowest number of social contacts.
The major strength of this review is that, to our knowledge, it is the first study comparing social participation of patients across different types of chronic wounds. Based on the current state of research, no differences between types of chronic wounds could be detected regarding any aspect of social participation. Nevertheless, some limitations should be considered. To make results comparable, we assigned the content of each article to dimensions as used in the model of Douglas et al, 16 irrespective of the actual wording in the article. This model focuses on older adults and, hence, does not consider the working situation, which might be an important source of social participation for younger people. We, therefore, assigned findings on the working situation to the aspect of (informal) social participation. Furthermore, the number of eligible articles differs with regard to the wound type and the aspect of social participation, which may limit the explanatory power. Additionally, the search revealed a mostly moderate methodological quality, especially in quantitative studies. Also, a large share of the relevant articles presents data from studies conducted in the United Kingdom. A reason for this might be the academisation of nursing, which is more advanced in the United Kingdom than in other countries. 100
Considering the positive effect social participation has on the individual's health, particularly older people, 101 , 102 , 103 it should receive more attention in clinical practice and public health. This includes the assessment of social support and the possibility to engage in social interactions as part of clinical care. For routine assessments in clinical care, a validated, short, and feasible, yet sufficiently comprehensive questionnaire would be needed.
A possibility to enhance social participation in patients with chronic wounds would be to strengthen the concept of Leg Clubs. Especially regarding patients' social interactions, Leg Clubs have shown positive impacts. 104 It might be promising to open the concept also for patients with other chronic wound aetiologies because patients' experiences barely differ, as found in this review. Following the approach in the United Kingdom, Leg Clubs have already been initiated in Australia and Germany. 88 However, differences between healthcare systems might impair the transferability of this concept. 104 For example, one Leg Club, which has been initiated in the German city of Munich, is located in a general practitioner's office and requires the physician to prescribe treatment; the project is based on the engagement of volunteers as it is not funded by German sick funds. 105
In routine care, social participation should receive increased attention both as a trigger of burden and as an outcome of therapy. For this, the patients' individual goal setting should be recognised and targeted with an individual treatment plan. One way to assess treatment goals of patients with chronic wounds is to use the Patient Benefit Index, 106 which also covers aspects of patients' social life.
This review revealed a high number of qualitative studies. Quantitative studies were not only less numerous but also of moderate quality only. In future research, emphasis should be placed on high‐quality quantitative studies that include control groups of people without wounds. Nevertheless, the assessment of social participation should not be restricted to counting contacts and activities but should also consider the patients' perception of and confidence with aspects of their social lives, rather calling for mixed‐methods studies. Following the finding that social participation is similar across different types of wounds, studies do not need to be restricted on one single wound aetiology but may investigate the social participation of different patients with diverse aetiologies simultaneously.
CONFLICT OF INTEREST
TMK, VA, NK, and CB have no conflict of interest. KP has received fees for consultations and/or presentations from the following companies: Bauerfeind, Bösl Medizintechnik, BSN medical/Essity, Coloplast, Convatec, DAK, GlaxoSmithKline, Hartmann, Lohmann & Rauscher, medi, Mölnlycke, Sanafactur, Schülke & Mayr, Uluru, URGO. MA has served as consultant and/or paid speaker for and/or has received research grants and/or honoraries for consulting and/or scientific lectures for and/or got travel expenses reimbursed and/or participated in clinical trials sponsored by companies that manufacture drugs used for the treatment of chronic wounds including 3M, AOK Bundesverband, Bayer Healthcare, Beiersdorf, Birken, Bode, B. Braun, BSN, BVmed, Coloplast, DAK, Diabet concept, Gerromed, GlaxoSmithKline, Johnson & Johnson, Lohmann & Rauscher, Medi, Medovent, Mölnlycke, Smith & Nephew, Schülke & Mayr, Söring, Sorbion, Systagenix, and Urgo.
Supporting information
Appendix 1 MEDLINE (PubMed) search strategy
TABLE A1 Quality assessment of studies included in the systematic review according to CASP checklists
ACKNOWLEDGMENTS
The authors thank the Scientific Communication Team of the IVDP, in particular Merle Twesten and Mario Gehoff, for copy editing. This is an unfunded study. Open access funding enabled and organized by Projekt DEAL.
Klein TM, Andrees V, Kirsten N, Protz K, Augustin M, Blome C. Social participation of people with chronic wounds: A systematic review. Int Wound J. 2021;18:287–311. 10.1111/iwj.13533
DATA AVAILABILITY STATEMENT
The data are available on reasonable request from the corresponding author.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix 1 MEDLINE (PubMed) search strategy
TABLE A1 Quality assessment of studies included in the systematic review according to CASP checklists
Data Availability Statement
The data are available on reasonable request from the corresponding author.