Author, Year | Results |
---|---|
ACTIVITIES OF LIVING BOTH INSIDE AND OUTSIDE THE HOME | |
Alten (2019) [33] | • 23% of RA patients found personal grooming difficult due to pain and fatigue • Inability to complete activities made people feel anxious, frustrated or “like a failure”, especially in patients > 40 years old |
Been-Dahmen (2017) [34] | • “Nothing is as difficult as changing your lifestyle” • Extent of support required determined by disease stage, presence of symptoms and change in situation • Patients struggle to accept help; less ready to accept help from children than partners |
Carter (2019) [36] | • Change in routine due to foot pain in PsA with needing to stop/modify activities (cleaning, shopping, cooking, gardening) • Difficulty with foot care |
Cunha-Miranda (2010) [37] | • 32.3% report impact of RA on quality of life; 26.4% said RA made life less enjoyable; symptoms of RA controlled daily lives in 25.1% • 31.8% difficulty performing ADLs • 25.1% constantly tired • Difficult tasks included gardening, sports, household chores, sleeping |
Hamnes (2011) [39] | • “Now I have to ask for an increasing amount of help and that transition is difficult” • Provision of techniques and aids that could make work and daily activities easier |
Herrera-Saray (2013) [23] | • Amputees found to have greater independence than patients with rheumatic disease • May “get used to” new circumstances |
Kostova (2014) [42] | • Family are most important source of support, esp. spouses and children, strong motivation to avoid becoming “passive” victim of disease and a vital source of emotional and practical support • Loss of identity because unable to do housework as previous • Difficulty with asking for help; more likely to accept help if offered spontaneously/needs anticipated rather than having to ask |
Kristiansen (2012) [43] | • Need to set up personal and practical support in the household |
Laidmae (2009) [44] | • Continuous vs. occasional support at home; 29% living alone |
Lempp (2006) [45] | • Required practical help from family members for activities of daily living • Children became caregivers |
Neville (1999) [31] | • 93% RA patients need help to carry out daily tasks |
Sato (2008) [46] | • Difficulties at home due to RA in 18% |
Strand (2015) [47] | • 60% difficult to perform “normal” activities due to RA; worrying about losing independence 75% • Difficulty making plans due to pain, mobility restriction and fatigue • Difficulty with housework (39%), sleeping (28%), shopping (24%), cooking (16%) |
Sverker (2015) [48] | • Difficulties with self-care such as dressing, doing housework, gardening and shopping • Difficulties were due to pain and stiffness, and functional limitations from deformities. |
Wollenhaupt (2013) [51] | • Impact of RA on life rated as “rather bad” or “very bad” • Housework requiring “a lot of effort” for 23.6%; 5.2% unable to do housework, especially running errands/shopping (restriction in lifting/carrying shopping bags in 57.7%) • 60% of respondents “more or less” dependent on a third-party in day-to-day activities, usually upon partner or family/friends |
SOCIAL PARTICIPATION NEEDS | |
Alten (2019) [33] | • 35–39% of people reported difficulty with others understanding their disease • Negative impact on relationship with spouse or partner, including sex life and intimacy • Negative impact on inclusion in family and social events • Better understanding from others in those with a partner or children; 43% wished for better understanding of disease impact from others |
Been-Dahmen (2017) [34] | • Trusting relationship with professionals, relatives and fellow patients • Emotional support required from relatives; however, they did not always recognise emotional issues. Partners more capable than children. • Most did not need support from fellow patients; some appreciated shared experiences. Most not interested in formal group meetings. |
Bergsten (2011) [35] | • Need for support from friends and family, as well as healthcare professionals, but patients need to trust/accept support offered • Need for friends and relatives to understand difficulties faced/problems created by disease |
Carter(2019) [36] | • Spending time with family and friends disrupted due to foot symptoms and functional limitations • Lowered mood due to preoccupation with pain; reliance on family members for support • Better understanding/empathy from those with affected family members; some found benefit from support groups • Patients with PsA and foot problems conscious of change to physical appearance and footwear restrictions; demoralised and stigmatised by the appearance of their feet; need to wear clothing and footwear to hide disease; self-conscious and reluctant to use gait aides |
Cunha-Miranda (2010) [37] | • 22.4% of RA patients feel “alone” in fighting disease; limited support |
Hamnes (2011) [39] | • Shared experiences, support and recognition from peers and validation of problems |
Henchoz (2013) [40] | • Community based free physical activity programmes for patients with arthritis |
Herrera-Saray (2013) [23] | • Feeling weird/embarrassed among others due to assistive device |
Kostova (2014) [42] | • Need for understanding from family members • Lack of visible symptoms meant some family members unable to appreciate patient’s suffering so felt misunderstood |
Kristiansen (2012) [43] | • Lack of understanding from friends/wider social environment, withdrawal by patient and their friends • Importance of work in developing social relationships and feeling of belonging • Loss of work leads to loss of social networks • Peer support enables participants to meet others with RA, especially with recent diagnosis, to legitimize personal experiences with symptoms that cannot be objectively measured, role models to show maintaining a close-to-normal life is possible |
Laidmae (2009) [44] | • Loneliness & the need to socialize with family & friends; 19% of respondents lonely • 33% of participants living alone (29% of total population are lonely) • Difficult to go out due to financial difficulties, mobility problems and fear of falling a victim of crime • Need for emotional support; emotional support received from the family consists of consolation, encouragement, listening to the worries and providing security |
Lempp (2006) [45] | • Retirement leads to loss of social connections • Loss of work means loss of identify, structure of daily life and social life |
Neville (1999) [31] | • 44% RA patients interested in self-help groups |
Sato (2008) [46] | • Difficulties in personal affairs in 62.9%; sexual difficulties in 14.3% • Emotional support from spouse or partner received by 56.2%; usually parents (27.3%) or children (20.5%) |
Strand (2015) [47] | • Isolation in 26%; friends/family not understanding pain and fatigue in 54% • RA affected closest relationships 32% (e.g. playing with children/grandchildren) • More difficult to find a partner 40%, less confident in sex-life 47%, negative affect on intimacy 17% |
Sverker (2015) [48] | • Difficulties (due to physical limitation/pain/fatigue) with social relationships, e.g. caring for children/grandchildren, participating in social events and engaging in community life |
Wollenhaupt (2013) [51] | • Impact of RA on social activities “strong” to “very strong” 27.6% |
FINANCIAL NEEDS AND SECURITY | |
Laidmae (2009) [44] | • Financial hardship in 60%; restriction of foodstuffs, 20% unable to purchase all medications • Limited sociocultural experiences: cinema/theatre, purchase of books, limited social visits • Suboptimal home environment: absence of warm rooms, hot running water, drainage, opportunity to wash |
Neville (1999) [31] | • > 80% patients reported concerns about health care cuts • 72% concerned with future financial coping; 56% concerned with present financial coping |
Sato (2008) [46] | • Income protection accessed by 32%; Financial difficulties in 12.9% |
OCCUPATIONAL NEEDS | |
Alten (2019) [33] | • 95% of participants reported leave, retirement or lack of career progression since RA diagnosis; 18% forced to retire and 23% slow career progression • 31% inadequate physical accommodations at work, 36% inadequate emotional accommodations • Barriers to work include difficulty with hand function (44%), pain (43%), unpredictable state of health (34%) |
Carter (2019) [36] | • Foot-related disability contributed to loss of work, or difficulty performing jobs due to foot pain and stiffness • Impact of modified footwear on job roles e.g. unable to wear dress shoes or safety boots |
Cunha-Miranda (2010) [37] | • RA affected ability to work: 24.7% • Absence from work due to illness: 21.6% (mean duration of absence 16–17 days) |
Giacomelli (2015) [38] | • 34% reported difficulties at work; increased work absenteeism in 11, 7.9% retired |
Hamnes (2011) [39] | • Need to continue to work, important to avoid disability pension (last resort) • Wanted to know work-related rights and rights related to social security |
Kristiansen (2012) [43] | • Need to continue work (with or without special conditions); this helped to maintain normal life and sense of normality; need for support to clarify work capacity • Work important to social, professional and personal identity, strongly linked to self-esteem • Colleagues as a personal/social network – friends and supports |
Laidmae (2009) [44] | • 27% of respondents employed; 25% concerned about losing their job • Perceived job insecurity • Alleviation of financial problems with work |
Lempp (2006) [45] | • Flexible working hours; lifts (elevators) at work place- to overcome difficulty in climbing stairs • Desire to continue to work • Loss of work means loss of identity, social network and structure of day |
Neville (1999) [31] | • Ability to work and maintain a job |
Sato (2008) [46] | • Majority of patients employed; 55–57%; 26% informed work about RA • RA-related difficulties at work in 47.8%; income protection accessed by 32% |
Strand (2015) [47] | • Negative impact on work arrangements, productivity and self-confidence • Less productive at work due to RA 71%; less confident at work due to RA 50% • Stop working/retire early 23%, changed type of work 17% or hours 17%; modifications to workstation/environment 12%, pay cut 8% • Regularly > 10 days off work per year in 22% • RA had negatively affected career prospects 9% |
Van der Meer (2011) [50] | • Need to improve/increase support in workplace (including from colleagues) • Ergonomic accommodations • Need for control over work; flexible hours and tasks, possibility of working at home, working alone when necessary (to improve concentration) • Easier commuting to work including getting a transfer when travelling a long distance to the workplace, easier parking arrangements • To understand legal work rights: including accommodations at the workplace and concerning disclosure when applying for a job |
Wollenhaupt (2013) [51] | • Physical impairment in daily work (inside and outside home) “rather strongly” to “very strongly” impacted in 49.6% |
EXERCISE AND LEISURE-RELATED NEEDS | |
Been-Dahmen (2017) [34] | • Empowered by information about type and necessity of physical exercise, as well as seeing other patients exercising |
Bergsten (2011) [35] | • Unable to do particular physical activities |
Carter (2019) [36] | • Difficulty with walking especially on uneven ground in those with PsA and foot involvement |
Cunha-Miranda (2010) [37] | • Less able to do sports |
Henchoz (2013) [40] | • Physical, psychological, functional and social benefits to exercise; arthritis specific barriers e.g. loss of function, pain, stiffness, concern of peers • No programs/consideration for those with arthritis • Non- arthritis specific barriers eg scheduling, cost, lack of time, peers do not exercise, carer responsibilities, etc |
Strand (2015) [47] | • Adverse effect of RA on social, family and leisure activities • Limited enjoyable activities (42%) and spontaneity (57%), keeping fit/playing spots (46%), gardening (39%), outdoor activities (33%) • Favourite hobby painful in 31% |
Thomas (2019) [49] | • Need for physical activity as a key part of managing RA; symptoms may help to motivate people to be physically active • Options where physical activity also had a social element, as a mode of transportation, dog walking all popular forms of activity • Some hesitation about general group activity classes; concern re: being unable to keep up or lack of understanding of RA |
TRANSPORT NEEDS AND ENVIRONMENTAL MODIFICATION | |
Herrera-Saray (2013) [23] | • Architectural barriers in the home, the workplace and/or outdoors • Lack of design standards for persons with disabilities, e.g. ramps, parking spaces and ample space for movement |
Henchoz (2013) [40] | • Environmental modifications favourable for physical activity: availability of facilities free of charge, maintenance of pavements, streetlights |
Laidmae, (2009) [44] | • Fear of falling victim of crime (16%); perceived increased risk due to physical impairment and poor health • Transport needs |
Strand (2015) [47] | • Difficulty with driving in 17% |
Wollenhaupt (2013) [51] | • Unable to drive a car 6.9% |