Characteristics of the field, family caregivers, and patients
This community (the field) is located in the Yangtze River Delta, Taihu Lake Basin, in the centre of Suzhou, a famous historical and cultural city. Suzhou is an important economic, trade, industrial, commercial, and regional distribution centre, and has a home care service workstation and a community healthcare centre.
A total of 17 family caregivers, aged 48–79 (57.41 ± 9.21) years, were interviewed and observed in this study. Most family caregivers had received at least six years of basic education, eight (47.06%) had been educated in primary school or lower level, five (29.41%) in junior high school, and four (23.53%) in senior high school. Fourteen family caregivers were female, including eight daughters (47.06%), three wives (17.65%), two sons (11.76%), one husband (5.88%), and three daughters-in-law (17.65%). The duration of care ranged from 2 to 204 months (Table 1).
Table 1
Demographic data of family caregivers
Number | Gender | Age (years) | Education background | Relationship with patient | Duration of care (months) |
CG1 | female | 48 | junior high | daughter | 12 |
CG2 | male | 79 | none | husband | 2 |
CG3 | female | 50 | junior high | daughter | 6 |
CG4 | female | 45 | senior high | daughter | 16 |
CG5 | female | 52 | junior high | daughter-in-law | 3 |
CG6 | female | 47 | primary school | daughter | 28 |
CG7 | female | 50 | junior high | daughter | 6 |
CG8 | female | 56 | primary school | daughter-in-law | 12 |
CG9 | female | 57 | none | daughter-in-law | 18 |
CG10 | male | 54 | primary school | son | 12 |
CG11 | female | 55 | primary school | daughter | 15 |
CG12 | female | 71 | primary school | wife | 204 |
CG13 | female | 65 | junior high | wife | 48 |
CG14 | female | 68 | none | wife | 24 |
CG15 | male | 60 | senior high | son | 12 |
CG16 | female | 57 | senior high | daughter | 48 |
CG17 | female | 62 | senior high | daughter | 24 |
[Insert Table 1 about here]
The demographic data of patients with pressure injuries and their characteristics are shown in Table 2. The patients’ ages ranged from 68 to 86 (78.47 ± 5.35) years, including 9 female patients. The wound duration ranged from 0.5 to 12 (2.42 ± 2.71) months. The pressure injury stages were as follows: stage 4 (30.43%, 7/23), stage 3 (21.74%, 5/23), stage 2 (39.13%, 9/23), and stage 1 (8.70%, 2/23).
Table 2
Demographic data of patients with pressure injury and characteristics of pressure injury
Number | Gender | Age (years) | Wound duration (months) | Wound size [length (cm)*width (cm)*depth (cm)] | Stage* | Location | Total number of pressure injuries |
P1 | female | 75 | 2 | 6*7*3 | 4 | sacrococcygeal region | 3 |
P2 | female | 78 | 1 | 7*8*4 | 4 | sacrococcygeal region | 1 |
P3 | male | 76 | 2 | 7.5*8,5*2.5 | 4 | sacrococcygeal region | 1 |
P4 | female | 78 | 0.5 | 4*4*1 | 2 | right ankle | 1 |
P5 | female | 83 | 3 | 4*5*2 | 4 | right heel | 1 |
P6 | female | 74 | 4 | 3*2*2 | 3 | sacrum | 1 |
P7 | female | 78 | 1 | 2*3*1 | 2 | sacrococcygeal region | 1 |
P8 | female | 84 | 4 | 1*2*0.3 | 2 | right back | 1 |
P9 | female | 82 | 2.6 | 2*2*1,7*7*2, 4*4*0.8, 3*4*1 | 2 (3), 1 (2)# | sacrococcygeal region, right forearm, heels, back | 5 |
P10 | male | 86 | 1 | 1*1*0.3 | 2 | left shoulder | 1 |
P11 | male | 79 | 1 | 3*4*0.1, 1*1*0.2 | 2 | sacrococcygeal region | 2 |
P12 | male | 73 | 2 | 2*2*0.3 | 2 | left hip | 1 |
P13 | male | 68 | 12 | 2*2*1, 2*4*1 | 3,4 | sacrococcygeal region | 5 |
P14 | male | 70 | 0.5 | 7*10*0.8 | 3 | sacrococcygeal region | 3 |
P15 | male | 85 | 0.5 | 3*5*1, 1*2*1 | 3,4 | back | 2 |
P16 | female | 85 | 2 | 1.5*2.7*1 | 3 | back | 1 |
P17 | male | 80 | 2 | 2.8*3.5*0.8 | 4 | left foot | 1 |
Note: *: stage 1; stage 2; stage 3; stage 4. |
#2 (3): There are three pressure injuries diagnosed as stage 2. |
1 (2): There are two pressure injuries diagnosed as stage 1. |
[Insert Table 2 about here]
Eight themes were extracted after analysing the on-site observation records and interviews. These include four topics on care content (food preparation and feeding support, maintaining hygiene, postural change and use of support, use of medication, and dressing), two perception topics (responsible care and compensatory companions, grief, and helplessness), and two challenge topics (identifying and alerting barriers to pressure injury and shortage of professional care and counselling resources).
Discrepancies between family and professional caregivers in pressure injury care practice
Sub-theme 1: family caregivers are experienced and skilled in food preparation and feeding support while professional caregivers have little time to prepare
During the field observations and interviews with the family caregivers, most were good at and experienced with food preparation. If family caregivers are too busy to prepare food, they arrange for care workers to provide nutritious food (CG16). CG3 carefully prepared different rice cereals, mushy noodles, shredded dried meat, and a wide variety of other foods suitable for P3 to eat every day, and viewed food preparation as extremely important. CG8 also personalised P8’s diet: ‘She, since last year, cannot chew, and so our family members will buy some protein powder and brew for her, basically, some vegetable juice, juice, rice paste, and sometimes along with some chicken breast puree, minced meat mixed together as her meals, so as to ensure her nutrition’. CG16: ‘In terms of food, we ask our nanny to prepare three meals a day, and I won’t let my mom cook or do housework since her diagnosis of chronic obstructive pulmonary disease. You know, she often feels tired and short of breath’.
Sub-theme 2: family caregivers must update their standards for choosing cleaning equipment to maintain hygiene
We found that 47.06% of caregivers (8/17) did not perform skin cleaning in accordance with the guidelines on body care and the use of sanitary paper. For example, we observed inappropriate behaviours such as family caregivers using rough paper to wipe faeces (to save money), using alkaline soap to clean the skin of patients (regardless of weak acid lotion), and using diapers to collect urine for patients who can urinate normally, simply to reduce the workload of care. CG11 would complain to the researchers: ‘We have been using this kind of toilet paper for many years, and none of us had any adverse reactions, why should we switch to wet wipes?’ CG8 would always make sure that there were enough diapers available, and when not many were left, she would immediately contact other family members by phone and ask them to buy them in advance. However, although P8 had a pressure injury, she was not incontinent and could get out of bed to urinate by herself. The pressure injury to her back was caused by sitting in a wheelchair for too long. CG8 thought that if P8 wore the diaper and sat in a wheelchair, she could deal with other piecemeal housework, such as shopping for food, feeding, and medicine administration, but CG8 had no idea about checking the saturation level of the diaper frequently. CG8 did not change the diaper until the patient’s hips became extremely red. The above situation must not be allowed to happen in hospitals or medical and health service units when patients are cared for by professional caregivers.
Sub-theme 3: family caregivers have questions about the details of changing positions and using upholder supports (e.g. mattresses)
In daily life, family caregivers are not very clear about the details of position change; most family caregivers just know ‘turn over’, but the frequency of turn over, the angle, and the upholders remain unclear. For patients bound to wheelchairs, most family caregivers cannot take timely measures to reduce pressure. Moreover, family caregivers have doubts about the methods of choosing a buttress. When P4 basks in the sun during the day, CG4 will arrange for P4 to sit in the wheelchair and only cover P4’s knees with a quilt, and then CG4 will deal with other affairs. CG4: ‘In fact, it is very difficult to calculate when I should do something, especially it is impossible to remember when it is time to change the position of CG4 or reduce the pressure; basically, I will decide to reduce the pressure by my own feeling, or I will ask P4 herself whether she is tired and if there is a need to change the position?’ CG16: ‘My mother now has bedsores (pressure injuries); I felt a little confused, I do not know what else to do except for turning over for her every day? Someone told me to use air-cushion mattresses, so I quickly bought one online. Is there any other better option for pressure redistribution?’ CG9: ‘You know, P9 has so many pressure injuries; I use some pillows, as well as my own handmade, stuffed some spongy cushions, so that she may be more comfortable’. CG7: ‘In our home setting, we have never considered a mattress in the prevention or treatment of pressure injuries; actually, I do not know where to find a professional, suitable mattress for her?’
Sub-theme 4: Family caregivers have access to a wide range of drugs and dressings for the prevention and treatment of pressure injuries, but most neglect decompression dressings
Non-medical professionals are less aware of the types of medical dressings available. In the home setting, they often obtain medicinal extracts, powders, and dressings for the prevention and treatment of pressure injuries from pharmacies, friends, and neighbours, but often ignore the role of decompression dressings. For example, CG17: ‘We have heard that a special kind of powder can work, so, once there is a little break on his butt, I will sprinkle it on him; initially, it did work, but now the wound is larger, I can't control it, and it is useless to sprinkle the powder. I went to community health services where there were no recommended ointments’. CG10: ‘I have been a live-in nanny for many years, and I have met two aged persons with pressure injuries on their buttocks, both of which were coated with golden cream (a kind of Chinese ointment) I bought, so when I was taking care of P10, I was very experienced and shared with the families that I had used dressings that I thought were very good’ (CG10's face showed a smug expression). ‘However, some inexperienced family caregivers also become confused’.
CG1: ‘In the aspect of pressure injury treatment, I feel very confused, because bringing older adults to the hospital is really time-consuming and troublesome. You know, she has now basically lost the ability to move; firstly, we not only have to gather relatives with a car to the hospital but also find family caregivers whose bodies are strong and lusty to transfer her. Above all, one of the family caregivers must be able to communicate with the doctor. Therefore, we may go to the hospital once or twice, and then according to the doctor's guidance, our family members take turns to change her dressings (of course, I am the primary caregiver; others dare not change the wound dressings). If there is no time to go to the hospital, I will take photos of her wounds to show the doctor, but I go to many hospitals; for my mother's pressure injuries, different hospitals may prescribe different medicines/dressings. Some were poultices, some were dressings, so in just two months, our family bought different kinds of drugs and dressings, but I didn't feel that they made her pressure injury any better’. In the field observation, we found that most caregivers held the opinion that the wounds needed to be ventilated, kept dry, and did not want to wrap too many dressings, such as some occlusive dressings. The researchers involved in the study suggested that family caregivers could use decompression dressings; however, in many cases, caregivers rejected them because of the high frequency of dressing changes, the cost burden to the family, and the potential impact on wound permeability.
Psychological perception of family caregivers participating in pressure injury nursing practice
The psychological processes of family caregivers involved in pressure injury nursing care are complex and contradictory. The target population who needs family caregivers to participate in the nursing practice of preventing and treating pressure injuries is often disabled, and disabled people need not only the help of family caregivers in physical care and daily life care but also more love and companionship from family caregivers.
Sub-theme 1: responsible care and compensatory companionship
CG16: ‘My brother is a businessman; my mother used to follow my brother to cities all over the country, and my mother took care of my brother’s family at that time. I didn't have enough time to do my duty to take care of my parents before, and now that I'm retired and free, I picked them up and did my best to take care of them. Sadly, in recent years, my parents have not been very well, and I took care of them, which can be regarded as my filial piety’. CG6: ‘Well, this year, I have been to the hospital many times, and the patient has been hospitalised twice, and I asked the doctor a lot about his primary diseases, he has been unable to eat, and every child shift in queue to accompany him, there is nothing to do but stay there with him’. CG5: ‘When someone in your family is sick, what can you do but directly face it? My husband is the only child; he is very busy, and I have to take care of my mother-in-law out of my responsibility. My mother-in-law has been very helpful to our family, and my children were brought up by my mother-in-law and my father-in-law, and I am so grateful to them, and I should do something to help them when they need it in return’. In families with close relationships, family caregivers of patients with pressure injuries may devote more effort to providing emotional support, time, and economic expenditure. We observed that if there are multiple children in a family, patients and caregivers are closer to each other, and visits are usually more frequent. A filial family caregiver was even resigned to accompanying the patient, taking care of her grandmother day and night, while she strictly followed the frequency of turn over every two hours, complying with the medical staff’s order. Most of the psychological perceptions of family caregivers participating in the nursing practice of pressure injuries are shouldered with responsibility, and they feel the need to provide compensatory and grateful care to repay the nurturing grace of their relatives.
Sub-theme 2: grief and helplessness
In the practice of caring for pressure injuries involving caregivers in many family roles, sadness, reluctance, anxiety, and helplessness were identified. CG15: ‘My dad has been lying in bed for a long time due to illness. Last month, he went to the hospital because of ascites, but the doctors said there were no good treatment methods, so he went home without any other treatment. As his children, we took turns taking care of him. *Sigh* (with eyes turning red), the problem (pressure injury) appeared half a month ago; at first, we went to the health clinic and bought the ointment by following the doctor’s advice. Whatever, his life is about to end. Luckily, I have plenty of time these days. I will do my best to take care of him, after all, I have only one dad...’ CG3: ‘At first, I found his skin red and slightly damaged, I thought it was just a scratch. I squeezed some scald cream onto the wound, but I didn't search for multiple treatments. One night later, I didn't expect it to worsen but it did happen. His skin turned black and hard, which scared us. I didn’t know what to do. I called the community health service centre, and they asked us to visit the tertiary hospital quickly. As a result, I went to the hospital and wandered around, mistakenly calling the wrong consultation room. I was in a hurry, without anyone guiding me, feeling very powerless and helpless’. We found that CG2 often took diligent care of P2, reducing the pressure frequently, putting cushions on him, and chatting with him. As he talks, he gradually becomes silent, conveying a heavy emotional response, especially when he helps P4 change his dressings and sees P4's wound. He gently touches P4's head, asks her to hold on for a while, and soon changes the dressings by himself. He also blames himself for not taking good care of P4, which caused the pressure injury.
Exploring the difficulties of family caregivers in pressure injury care practice
The family caregivers are not professional caregivers. After on-site observation of these 17 family caregivers and patients, they also faced two major difficulties in pressure injury care practice: identifying and alerting barriers to pressure injury and shortage of professional care and counselling resources.
Sub-theme 1: identifying and alerting barriers to pressure injury
Seventeen family caregivers mentioned more than once that the patient had little red spots, erythema, and they did not take it seriously, and later it gradually developed into a pressure injury, or several family caregivers thought that it may be eczema and that it was good to blow it and keep the affected area dry. CG9 mentioned: ‘I am very good at recognising pressure injuries, and every time I remind P9’s other family members that there is redness in this area, we should pay attention to it, and sprinkle some baby powder to keep her place dry, so that it will not worsen’. However, CG9 was overconfident; her measures were not in line with practice guidelines, and the warning signs she mentioned were not comprehensive. CG13 believed that her husband was allergic and that his skin was sensitive; therefore, he often showed redness. CG7 expressed regret for not recognising and treating her earlier: ‘Oh, I was too busy a few days ago, the times I went home decreased, and then when one day I came back to turn her over, I suddenly found this wound; hey, if I had found it earlier, it would have been easier to treat the wound and promote her wound healing faster’.
Sub-theme 2: shortage of professional care and counselling resources
Of the 17 family caregivers, 58.82% indicated that their patients had no access to professional knowledge or resources since the pressure injury occurred. This suggests the need to strengthen science popularisation resources in the community and increase professional care and consultation resources. CG5: ‘I wish I knew the consultation resources and treatment procedures earlier, so that it may not take too long to go to the doctor’. CG16: ‘My mother has Parkinson's disease, her respiratory system is not very good, she always has dyspnoea when she walks for several metres, her lumbar spine is not very good, and she has a hunchback, which cannot withstand the hospital tossing back and forth; if someone comes to the house, or I can get care resources anytime and anywhere, it is very beneficial for me. It is best to have a professional caregiver set up a consultation point at the community health service centre in front of my home because it is close, and I can run to ask questions about pressure injury timely, furthermore, I can save my precious time to improve the work efficiency’.