Table 4.
Data extraction table for included studies.
| Study | Country | Title | Phenomena of interest | Methodology/Method | Setting/context/culture | Participant characteristics and sample size | Research notes |
|---|---|---|---|---|---|---|---|
| Bogan et al. (2007) | USA | Experiences of living with non-cancer-related lymphoedema: Implications for clinical practice | The purpose of this study was to gain insight into the perspective of individuals with non-cancer-related lymphoedema to increase understanding of their experiences and, thereby, enhance treatment and guidance by healthcare professionals. | Qualitative – Qualitative approach within a naturalistic inquiry. Semi-structure interview with guide/open questions, broad themes with interviews audio recorded and transcribed with field notes. Analysis – was completed via content analysis and ethnography. Male and female integrated into one account. | Patients own home, diagnosed with non-cancer related lymphoedema or primary lymphoedema, who were or had received inpatient treatment in a regional hospital. | Purposive sampling, 7 participants (3 male and 4 female, 5 White, 1 Black, 1 Alaskan Indian), bilateral leg oedema (5), unilateral leg oedema (1), bilateral leg oedema and hand (1). Age (mean) 52 years, range 36–75 years, inpatient involvement 3 years, and discharge 8 months to 5 years. | No application to gender. |
| Results | Three comprehensive themes emerged with sub themes identified: Three themes emerged: (1) nowhere to turn, (2) turning point and (3) making room | ||||||
| Borbasi et al. (2004) | Australia | Getting it together: men’s and their carers' experience of lymphoedema | The meaning and understanding of the experiences of men diagnosed and living with lymphoedema. | Semi structured interviews which lasted between 30 and 60 min, which audio taped and transcribed. | Men and their partners following the development of secondary lymphoedema related to surgery. | Over 18 years diagnosed with secondary lymphoedema following surgery and their spouses. | No application to gender. |
| Results | Four broad themes emerged from the data: (1) the nature of lymphoedema; (2) sequelae of lymphoedema; (3) scarcity of information about lymphoedema and 4) spouses' perspectives. | ||||||
| Crow (2020) | USA | Illuminating the experiences of growing up and living with primary lymphoedema: a life history story. | The purpose of the qualitative research study was to collect, preserve, and understand the life histories of young adults who grew up with and are living with primary lower limb lymphoedema in the USA. | Qualitative – Life histories related to interpretivist paradigm embedded within social constructivism. This led to the use of guided conversations as part of the life history story telling. | Men and women diagnosed with primary lymphoedema in the lower limbs. | Purposive sampling participants – 5 (4 women and 1 man) age range of 19–40 years, diagnosed with primary lymphoedema. | Social constructivism, mentioning of a gendered lens (sociocultural/medica-historical contexts). |
| Results | (1) striving to matter to and for others and self; (2) complexities, complications, and confusions: Life difficulties along the journey and (3) lymphie conundrums: Grappling with normalising/othering. The first includes sub-themes about mattering to significant others, healthcare providers, others with primary lymphoedema and to self. The second includes sub-themes about the complexities of decongestive therapy and self-management, schooling, other chronic diseases, and other priorities that push lymphoedema to the background, the complications of biographical disruption and transformative brushes with cellulitis and lingering confusions about cause and heritability. The third includes sub-themes about stigmatisation, rejection, and discrimination, hiding to pass as ‘normal’ and its costs and straddling the lymphie conundrum with clothing. | ||||||
| Deng and Murphy (2016) | USA | Lymphoedema self-care in patients with head and neck cancer: a qualitative study. | Reporting head and neck cancer patients’ perceived lymphoedema: Self-care education: Self-care practices Self-care suggestions. |
Mixed methods – semi structured interviews which lasted between 30 and 60 min, which audio taped and transcribed. | Men and their partners following the development of secondary lymphoedema related to surgery. | 20 participants – male 65% (n=13) and women 35% (n=7), 100% White, diagnosis and cancer was also present majority 50% were oropharynx location stage 4. | No application to gender. |
| Results | Themes generated related to the aims – Aim 1: Perceived lymphoedema self-care education components – (1) components of self-care education, (2) positive comments of self-care education and (3) insufficient or inappropriate information on self-care education; aim 2: reported lymphoedema self-care practices levels of engagement and methods; Aim 3: suggestions on lymphoedema self-care. | ||||||
| Frid et al. (2006) | Sweden | Lower limb lymphoedema: Experiences and perceptions of cancer patients in the late palliative stage. | The aim of this study was, therefore, to explore patients' experiences and perceptions regarding the influences of LLL, and how they manage this in the late palliative stage. | Qualitative – Phenomenology, semi-structured interviews, open ended questions – experiences and thoughts about having lower limb lymphoedema (LLL). Analysis – phenomenographic approach using second order perspective rather than first. | Outpatient clinic who were diagnosed with cancer related lymphoedema who were palliative. | Participants – 13 (9 women and 4 men), diagnosis cancer related lymphoedema and who were palliative (pancreatic – 2, cervical – 2, renal – 1, breast – 1, prostate 3, adrenal – 1, lung – 1, unknown origin – 1, cecal – 1), recruited from three different clinics in Stockholm and via ‘maximum variation sampling strategy, interview and death (12–168 days), severity mild – 4, moderate – 3, severe – 6. | No application to theory, or gender. |
| Results | Four main categories were identified: (1) the future – hope – the patients were aware that the LLL was permanent, but still they held hope for improvement, (2) the physical aspects – discomfort and disgust – related to the appearance of the limb. (3) interactions with others – persons' reactions affected the way in which they perceived their limb. (4) efforts – made by staff had a great influence on the patient’s situation, (5) dealing with problems – to adapt oneself – or not – (6) control through knowledge – but also avoidance strategies. | ||||||
| Hamilton and Thomas (2016) | Canada | Renegotiating hope while living with lymphoedema after cancer: a qualitative study. | The purpose of the present analysis, then, was to assess the hope experiences of individuals living with SLC (including underrepresented groups such as men and those with lower limb SLC), an area which has been unexamined. | Qualitative – Qualitative approach – semi-structured interviews, open ended questions – experiences and thoughts about having lower limb lymphoedema (LLL). Analysis – phenomenographic approach using second order perspective rather than first. | Clinic and people’s home via the telephone and who were diagnosed with cancer related lymphoedema and self-managing. | Participants – 13 from two sites on Fredericton and Ottawa which included 11 women and 2 men. The age range is between 31 and 77 years with a diagnosis of cancer ranging from 2 to 34 years with a mean of 10 years with CRL diagnosis being 1–11 years with a mean of 8.5 years. Cancer diagnosis, cervical – 1, breast 6, melanoma 4, endometrial 1, prostate, and colorectal 1. Eight lived in an urban are with five working full time. | Hope based theory, No gender theory |
| Results | Four themes emerged: (1) renegotiating hope in the context of a chronic condition – one striking finding was that participants struggled to articulate what hope meant, even though the term is popularly; (2) the objects of hope – when participants were asked generally about hope, they most often oriented towards a description of the objects of their hope; (3) hope as an outcome – while some participants struggled to define what hope was, they were much more capable of discussing hope as an outcome – or the factors that contributed to hope; (4) hope as action – while the distinction between coping and hope is subtle when exploring hope as action, it is important to note that participants talked about acting as a way of living hopefully | ||||||
| Jeans et al. (2019) | Australia | Patient perceptions of living with head and neck lymphoedema and the impacts to swallowing, voice and speech function. | The aim of this study is to explore the experiences of patients with HNC who have HNL following treatment and examine their perceptions of the impact of HNL on their swallowing, voice and speech function. | Qualitative – Qualitative approach, semi-structured – face to face (6 people) and telephone (7 people), with a socio-demographic and illness questionnaire administered, followed by a series of open-ended questions. The answer to these questions was audio recorded. Analysis – led to the preliminary coding through NVivo 10 reflexivity was considered through debriefing sessions to discuss and refine interpretations. | Secondary setting/hospital/maxillofacial | 12 participants – male 66.7% (n=8) and female 33.3% (n=4), 50% had either neck dissection or not, with almost a 50% split between tumour and node staging. | No application to theory, or gender. |
| Results | Four themes: (1) it feels tight; (2) it changes throughout the day; (3) it requires daily self-monitoring and management and (4) it affects me in other ways. | ||||||
| Maree et al., (2016) | South Africa | ‘Just live with it’: Having to live with breast cancer related lymphoedema. | The objective of the study was therefore to explore how people living with breast cancer related lymphoedema experience this complication. | Qualitative – Qualitative approach, unstructured interview an opening question asked, ‘Please tell me what it is like for you to live with lymphedema’, conducted in Afrikaans or English, and audio taped. Teschs open coding was undertaken to reach data saturation. Reflexivity was mentioned as being continuous in the study. | Lymphoedema initiative at a university to explore breast cancer related lymphoedema in men and women. | Purposive sampling, eight women and one man. The age range was 43–61 years with the average being 61 years. Seven with Afrikaans, one Greek and one Tswana. Six participants had stage two, one had stage two to three and two had stage three lymphoedema. The presence of oedema was between two to 60 months. | Roy Adaptation Model of Nursing (biopsychosocial). |
| Results | Four themes emerged: Theme 1: ‘Just live with it’: Lymphoedema the unknown and unspeakable, Theme 2: ‘My arm is painful’: Living with the physical consequences of lymphoedema, Theme 3: ‘You cannot hide it’: living with an altered body and Theme 4: ‘I am grateful’: Coping with the lymphoedema. | ||||||
| McGarvey (2014) | Australia | Lymphoedema following treatment for head and neck cancer: impact on patients, and beliefs of health professionals. | This study aimed to explore the relationships between: How lymphoedema affects head and neck cancer patients. Beliefs of medical and health professionals regarding which patients might be more at risk of developing lymphoedema, How it affects patients, How lymphoedema might be effectively managed. |
Qualitative – Study design unclear – semi-structured interview (one-on-one), interview schedule/guide, audio recorded (unclear), transcribed verbatim (no software stated), codes/themes (no mention of the framework applied), 2nd researcher involved in the code/theme generation. | Secondary setting/hospital/maxillofacial | 20 participants, 10 patients (8 male and 2 female), age range 32–75 years, mean age 60 years 10 healthcare professionals – n=2 consultant maxillofacial surgeons, n= 1 dietitian, n= 1 speech pathologist, n=2 physiotherapist, n=1 radiation therapy nurse and n=1 head and neck co-coordinator. No statement of gender, age, experience or qualifications. | No application to theory, or gender. |
| Results | The results 6 themes related to patients with a further 3 related to healthcare professionals: Patients: (1) physical effects of lymphoedema, (2) diurnal pattern, (3) tightness and reduced cervical spine range of motion, (4) mucous secretions and swallowing, (5) psychosocial aspects (negative body image) and (6) strategies to assist with facial lymphoedema. Healthcare professionals: (1) clinical features, (2) beliefs about the effects of secondary lymphoedema and (3) management strategies. | ||||||
| Meiklejohn et al. (2019) | Australia | How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia. | The purpose of this study was to apply a social constructivist approach to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life. | Qualitative – Qualitative approach, focus group and telephone interviews with all other participants, with two to four participants in each group. Interview guide with open-ended questions (questions provided). Analysis – Interviews were transcribed verbatim and transcripts were imported into NVivo8 qualitative software, in accordance with the constructivist grounded theory, initial, focused, and theoretical coding were performed. | Secondary setting/hospital following cancer treatment. | Participants were 29 in total with men (n=3) and female (n=26), age median 63 years (range 39–80 years). Majority (n=20) were breast cancer related diagnosis. | Social constructionism and social constructivist framework. |
| Results | Three conceptual categories were developed from the data. (1) altered normalcy – physical and psychosocial effects of lymphoedema and their impact on everyday life, (2) accidental journey – explores the secret society of having a lymphoedema diagnosis and the importance of finding a healthcare professional and (3) ebb and flow of control elements that influenced participants’ perceived control over lymphoedema. Core category – sense of self. | ||||||
| Michael et al (2016) | Australia | The experiences of prostate cancer survivors: Changes to physical function and its impact on quality of life. | The aim of this research is to help understand the experience of prostate cancer survivors in relation to physical function and how these changes impact on prostate cancer survivors’ quality of life. | Qualitative – Phenomenology, semi-structured interviews, verbatim transcripts, thematic content analysis, reflexivity/member checking and 3rd part verification were stated. | Prostate Cancer Support Group for those whom had received treatment. | Purposive sampling – 7 men, mean age 64.5 years (51–83 years, despite the work stating 41–80 years). Five men were married, one divorced and one widowed, with diagnosis ranging from 1993 to 2010. Radiotherapy was received by 3 men, with 4 receiving prostatectomy. | No application to theory, or gender. However, masculinity was mentioned, and related to other research studies. |
| Results | The main themes generated were (1) masculinity – related to physical changes, (2) loss of control of over daily lives – related to incontinence and impotence and (3) age-specific perspectives – this considered employment. | ||||||
| Nixon et al. (2018) | Australia | A mixed methods examination of distress and person-centred experience of head and neck lymphoedema. | Examine distress and QoL in people undertaking a 22-week HNL treatment program following treatment for HNC Explore the person’s experience of HNL and distress and the impact on day-to-day functioning following completion of HNL treatment. |
Mixed methods, QoL: was assessed using EORTC QLQ and H&N43, with these subject to Freidman test, with pairwise comparisons and Bonferroni correction, Wilcoxon signed rank test, SPSS version 22. A single semi-structured interview was conducted 10–22 months after completion of the 22-week HNL treatment, once the data from. An eight-question interview guide, analysis of the interviews was conducted using the model proposed by Braun and Clarke. | Secondary setting/hospital/maxillofacial | 10 participants – male (n=9) and female (n=1), age 65.1 (mean) with a range of 42–89 years, inclusion and exclusion criteria stated, convenience sampling appears to be present, due to the location, but is stated directly in this article. | No application to theory, or gender. |
| Results | The six main themes were: (1) the psychosocial impact; (2) the physical experience and pattern/timing; (3) experience of receiving treatment; (4) day-to-day distress; (5) supports that helped manage distress and (6) adjustment to a ‘new normal’. The three sub-themes were (1) emotional, (2) appearance changes and 30 socialisations. | ||||||
| Perera et al. (2007) | Sri Lanka | Neglected patients with a neglected disease? A qualitative study of lymphatic filariasis. | The objective of the study was to inform future interventions and policy to help these vulnerable, neglected people. By doing so, it responds to needs for specific research identified in the most recent review of the sociocultural aspects of filariasis. | Qualitative – Qualitative approach, semi-structured, guided interviews in the local language, Sinhalese. Interviewers worked in single-sex pairs: one conducting the interview, the other recording the responses manually. Interview notes were transcribed and later translated into English for analysis. Analysis – An adaptation of the affordability ladder framework was employed to organise and analyse the data. | The infection currently endemic in Sri Lanka due to W. bancrofti and is presently confined to eight districts in the southern, western, and north-western provinces [20]. Our study took place in three villages in Matara and one in Galle in 2004–2005. Reference to lymphoedema n Sri Lanka has been traced to the 13th century AD. | Purposive sampling to select 60 (29 men and 31 women with filarial lymphoedema, 45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected by poverty status, sex and lymphoedema stage. Low income (male 4 and 11 women), middle income (male 8 and female 13), and high income (male 2 and female 7). A separate sample of 15 men with filarial hydrocoele. | An adaption of the healthcare affordability ladder framework, but no application to gender theory. |
| Results | Reference ladder (illness) – (1) delayed diagnosis was common and had irreversible consequences, (2) household economy ladder – struggling to find work and (3) impact ladder – The stigma associated with LF was a dominant theme | ||||||
| Río-González et al., 2018 | Spain | Living with lymphoedema – the perspective of cancer patients: a qualitative study. | To illuminate the impact of LE on-cancer patients’ lives through their experiences, perspectives, challenges and barriers. | Qualitative – Phenomenology, stage 1 – unstructured interview with an ‘What is your experience with lymphoedema?’ and stage 2 semi-structured interviews with a question guide developed following stage 1. All interviews were tape recorded and transcribed verbatim. Researcher field notes were used. Analysis – thematic analysis undertaken, no data analysis software was used. Rigour – Guba and Lincoln for establishing trustworthiness of the data. | Two outpatient physiotherapy clinics focussing on people men and women diagnosed with cancer related lymphoedema. | Purposeful sampling, 11 participants being recruited between 2014 and 2016 (1 male and 10 female). | No application to theory, or gender. |
| Results | One main theme and four sub themes emerged: (1) living a life with multiple barriers – subthemes: (1a) discovering physical and psychological barriers – (1b) searching information, (1c) uncomfortable moments, (1d) building relationships – the social barriers, (1e) controlling expenses. | ||||||
| Shakespeare, L (2012) | Scotland | Lymphoedema in a remote and rural area: An investigation into the prevalence of lymphoedema and its effect on daily living and quality of life in a remote and rural area in the far north of Scotland. | To estimate the prevalence of lymphoedema/chronic oedema and to investigate the characteristics of the condition in a very remote and rural area of Scotland and to explore the experience of a sample of people living with the condition in that area. | Mixed methods – Stage 1 quantitative data collection (GP survey), stage 2 – Individual survey with closed and open questions, stage 3 – semi-structured interviews. | GP practice survey (stage 1), with survey sent to individuals via the GP (stage 2). Telephone interview with participants (stage 3). | Stage 1 – GP lymphoedema prevalence survey = total 17 GP practices. Stage 2 – Patient characteristics of lymphoedema = total 49 (10 male and 39 female). Stage 3 – Semi-Structured interviews = total 10 male 1 and 9 female. |
No application to gender theory |
| Results | In stage 3 (interviews) this led to the identification of five themes: (1) physical effects of lymphoedema on everyday life, (2) psychological effects, (3) treatments, (4) knowledge about lymphoedema and (5) provision of information about lymphoedema. | ||||||
| Stolldorf et al. (2016) | USA | A comparison of the quality of life in patients with primary and secondary lower limb lymphoedema: A mixed-methods study. | The purpose of this study was to describe and compare the impact of the symptoms of lower-limb lymphoedema and the associated symptom intensity and distress on the quality of life of patients by lymphoedema type. | Mixed methods – web-based survey (demographics, Lymphedema Symptom Intensity and Distress Survey-Leg (LSIDS-L), and one open-ended qualitative question). Participants’ responses to the qualitative, open-ended question were analysed using ATLAS.ti, (version 6.0; Dowling). | Online web-based questionnaire derived from a validated tool and followed by open ended question | Participants – 213 participants. Four categories of participants by lymphoedema type emerged: primary lymphoedema (n=96, 45%), secondary cancer-related lymphoedema (n=37, 17%), secondary non-cancer-related lymphoedema (n=45, 21%), and lymphoedema of unknown causation (n=35, 17%). Lower-leg lymphoedema of unknown origin were not included due to the ambiguity of lower-limb lymphoedema. Participants were predominantly female (n=159, 89.3%) male (n= 54), employed full-time (n=75, 42.1%), and with lymphoedema in both legs (n=72, 40.4%). | No application to theory, or gender. |
| Results | Qualitative outcomes: 1) impacting psychosocial well-being altering body image that impacts their psychological and social well-being, 2) lacking resources – lack the financial resources, and availability of lymphoedema practitioners, 3) physical and functional impairments – physical consequences and functional impairments, and 4) treatment and care – care by others and self-care, problems, and challenges. | ||||||
| Thomas and Hamiton (2014) | Canada | Illustrating the (in)visible: Understanding the impact of loss in adults living with secondary lymphoedema after cancer. | To explore experiences of loss and hope in men and women living with SLC. | Qualitative – interpretive descriptive design, a brief questionnaire (socio-demographics, cancer and SLC diagnoses, and treatment). Semi structured interview guide. Analysis – interpretive description draws on several methodological strands, including contemporary phenomenology (Thorne, 2008), within the software program, NVivo 10. | The project was based out of two research sites (Fredirection, NB, and Ottawa, ON). | Participants – 13 (11 women, 2 men) ranged from 31 to 77. Eight of the 13 participants lived in urban areas. Five participants were working full-time. Participants had been diagnosed with cancer from 2 to 34 years (mean 10 years) prior to being interviewed. Six participants had breast cancer, four had melanomas, and three had reproductive cancers. Participants had been diagnosed with SLC from less than 1 year to 11 years post-cancer diagnoses (mean 8.5 years). Seven participants had lower limb SLC, while 6 were experiencing upper limb SLC. | No application to theory, or gender. |
| Results | Three key themes emerged: Theme 1 – (in)visibility and appearance, Theme 2 – (in)visibility and action, is connected to function and Theme 3 – (In)visibility of the present and future – loss of the present). | ||||||
| Towers et al., 2008 | Israel | The meaning of success in lymphoedema management. | What do people with lymphoedema consider to be the meaning of success in the intensive phase of lymphoedema management? What do people with lymphoedema consider to be the meaning of success in the long-term phase of lymphoedema management? |
Qualitative – Phenomenology, semi-structured interviews and followed an interview guide. | Maccabi Healthcare System in the south district of Israel and with those diagnosed with cancer related lymphoedema who had received intensive treatment and now had moved to maintenance therapy. | Purposive sampling, total 10 = 3 male and 7 female. Time since diagnosis being 1–35 years. | Biopsychosocial model (Armer). No application to gender theory. |
| Results | Two themes emerged from the data: (1) detachment and bad feelings/experiences immerged and (2) lack of clarity as to moving to long-term phase of treatment – The second aim meaning of success in the maintenance (long-term) phase. Two themes: (1) empowerment – ‘not getting worse’, ‘stable’, ‘maintain’ and the goal of maintaining, she said: Expectations – they talked about acceptance, about having no other choice, but dealing with their condition. | ||||||
| Towers et al., 2008 | Canada | The psychosocial effects of cancer-related lymphoedema. | Seek further understanding of the psychosocial context of the suffering in those with cancer related lymphoedema. | Qualitative – Phenomenology, semi-structured interviews with open ended questions were used in the interview which followed the interview guide. Analysis – the content analysis approach was used once all verbatim transcription was completed. | To recruit and interview men and women with cancer induced lymphoedema from hospital based lymphoedema service, local therapists and lymphoedema association and support group. | Participants – 19–11 patients (10 female and 1 male) and 8 spouses, with diagnosis related to breast cancer (9), melanoma (1) and penile (1), affecting arm (9) and leg (3 with 1 unilateral and 2 bilateral). Age range 50–75 years with a mean of 63.7 years. | No application to theory, or gender. |
| Results | Four themes emerged from the data: (1) frustration with lack of financial support from government and insurance companies, (2) being alone with this life-long problem: This related to conflicting information on the subject and treatment options and limited knowledge by physicians and society, (3) the burden of living with a swollen limb: this focused upon the realisation that the condition was chronic and (4) the importance of support systems: spouses, peer support groups and exercise sessions. | ||||||
| Viehoff et al. (2016) | Netherlands | Functioning in lymphoedema from the patients’ perspective using the International Classification of Functioning, Disability and health (ICF) as a reference. | The aim of this study is to determine relevant aspects of functioning as well as relevant environmental and personal factors from the lymphoedema patients’ perspective and to quantify these using the ICF. | Qualitative – Qualitative approach, six different focus groups were used, each with 3–8 participants. These groups consisted of patients with: (A) lymphoedema with non-oncology background (mixed locations), (B) lymphoedema with oncology background (mixed locations), (C) lymphoedema of the upper limb (mixed causes), (D) lymphoedema of the lower limb (mixed causes), (E) lymphoedema in the genital region (mixed causes) and (F) lymphoedema in the head and neck region caused by cancer treatment. Analysis – the data analysis was conducted in four steps and followed the method of ‘meaning condensation’ with step four, each MC was linked to one or more ICF categories. | Outpatient location and with individuals that had been diagnosed with cancer or non-cancer related lymphoedema. | Patients were recruited from five different centres during 2012–2013. Stucki and Cieza. Thirty-one patients were recruited (men 10 and women 21), with a mean age of 55 years and locations ranging from upper limb (7), lower limb (11), midline (5), mixed locations genital (6) and breast/upper limb (2). Lymphoedema related to cancer (18) and non-cancer related (13) with 15 employed in work. | ICF Framework, but no application to theory, or gender. |
| Results | Body function – the top five frequently mentioned categories were 1) ‘b435, Immunological system functions’, (impairments in the lymphatic system); 2) b152, Emotional functions’ (emotions such as fear, anger, joy); 3) b280, Sensation of pain’; 4) b126, temperament and personality functions’ (including psychic stability, confidence and optimism); and 5) ‘b840, Sensations related to the skin’ Body Structures – the top five mentioned categories were 1) ‘s750, Structure of lower extremity’; 2) ‘s730, Structure of upper extremity’; 3) ‘s630, Structure of reproductive system’; 4) ‘s710, Structure of head and neck region’; and 5) ‘s760, Structure of trunk’. Activities and participation – the top five categories identified were 1) ‘d920, Recreation and leisure’; 2) ‘d415, maintaining a body position’ (lying, sitting, standing, etc.), 3) ‘d570, Looking after one’s health’ (ensuring comfort, maintaining health, and managing diet and fitness); 4) ‘d450, Walking’; and 5) ‘d475, Driving’. In focus group C (upper limb lymphoedema with mixed backgrounds), 1) ‘d640, doing housework’ occurred most frequently, whereas 2) ‘d415, maintaining a body position’ occurred most frequently in the genital lymphoedema group (E). Environmental factors – 1) ‘e115, Products and technology for personal use in daily living’ prostheses); 2) ‘e580, Health services, systems and policies’, 3) ‘e355, Health professionals’; 4) ‘e310, Immediate family’; and 5) ‘e110, Products and substances for personal consumption’. Personal factors can be broadly divided into sociodemographic factors (including gender and race), personal living situations and coping strategies. | ||||||
| Watts and Davies (2016) | Wales | A qualitative national focus group study of the experience of living with lymphoedema and accessing local multi-professional lymphoedema clinics. | What is it like to live with lymphoedema in terms of its effect on quality-of-life and well-being? In what ways has access to local lymphoedema clinics made a difference to their lives? |
Qualitative – Qualitative approach, convenience sampling via eight local lymphoedema clinics in Wales. Digitally recorded focus group interviews. Analysis – content analysis (Coffey and Atkinson). | Local lymphoedema clinic with men and women interviewed through focus groups that were mixed gender and causes (cancer and non-cancer related). | Total 59 = 10 male and 49 women with an age range of 22–86 years. Twenty-four participants were diagnosed with cancer (7 men and 18 women) with 34 diagnosed with non-cancer related lymphoedema (3 men and 31 women). | No application or gender theory |
| Results | Themes: (1) it is a battle: Living with lymphoedema, (2) delays in correct diagnosis – (3) the impact of the local specialist led lymphoedema. | ||||||
| Williams et al., 2004 | United Kingdom | A phenomenological study of the lived experience of people with lymphoedema | Explore the lived experiences of people with various types of lymphoedema. | Qualitative – Phenomenology, demographical data was gathered as a baseline from lymphoedema clinic semi-structured interviews, open questions analysis – via the ‘open coding’ offered by Straus and Corbin (1990). | Specialist lymphoedema clinic in London to explore the lived experiences of various types of lymphoedema. | Participants 15 (12 women and 3 men with an age range of 35–89 years with a mean of 57 years. Lymphoedema presentation was 1–41 years. Causes – breast cancer (3), cervical cancer (2), carcinoma penis (1), primary lymphoedema (7), venous insufficiency. | No application to theory, or gender. |
| Results | Three main themes were identified: 1) the experience of lymphoedema diagnosis – 1a) uncertainty, 1b) fishing in the dark and 1c) tension with health-care professionals. 2) experiencing and dealing with lymphoedema – 2a) facing others – the social, 2b) keeping it hidden – difficulties with self-image, 2c) rehearsing the story and learning to open, 2d) making sense of it and 2e) getting on with it – a variety of coping strategies. 3) lymphoedema treatment – 3a) starting on a firm footing, 3b) knowing what I need and 3c) reading my body and judging the effect | ||||||
| Total | 22 | Qualitative appro = 9 Phenomenology = 6 Mixed methods = 5 Unclear = 2 |
Total male = 182 Total female = 425 |
Gender theory = 0 Gendered lens = 1 Biopsychosocial = 1 Social construction = 2 Adaptation model = 1 Adaption framework = 1 |
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