When we asked readers to list the most important attributes of a good caregiver, the results provided incredible insights and raised concerns about some significant but under-appreciated characteristics
In a recent survey by QASA on the attributes of a good caregiver that attracted 48 responses, we listed six attributes with five characteristics per attribute. Some of the characteristics pertained to more than one attribute. For example, the importance of pressure sore prevention was covered in two attributes: “Competence with techniques”; and “Knowledge of dangerous complications”.
The questionnaire requested respondents to grade the importance of each characteristic on a scale of one to five and the importance of each attribute on a scale of one to six. Based on the collective results, a score out of five was calculated for each characteristic per attribute. A similar score was calculated for each attribute to illustrate the importance of each attribute in relation to one another.
Lastly, the free text comments were grouped into the underlying attributes deducted from the comments. The scores of each characteristic was multiplied by the respective attribute scores. This provided an attribute-weighted overall ranking of the 30 characteristics as displayed in Table 1.
The results illustrate very interesting and positive findings but also raise several red flags. In this article we reflect on the positive findings as well as the red flags. Where relevant, reference will be made to previous ROLLING INSPIRATION articles, which can be found on the website by clicking on the “Ida’s Corner” tab in the “Regulars” drop-down menu.
The positives
The characteristics of the attribute “Commitment to caring” dominated the top 10, including top scoring “Work ethic”, “Willingness to go the extra mile” and “Anticipation of needs”. Personal hygiene, bowel care and pressure sore prevention also featured strongly.
It is evident that the respondents were united in their regard for the importance of a positive and constructive caregiver attitude as well as competence in the execution of their duties. Characteristics such as compassion, gentleness and empathy were all at the lower. The free text questions on positive and negative caregiver characteristics also focussed mainly on caregiver attitude and hygiene.
I consider this very positive, but I must point out that all of the above cuts both ways. Constructive and caring attitudes as well as excellence in the execution of duties must be appreciated and nurtured by the person who is being cared for.
All too often I hear of and experience that people being cared for consider caregivers as a right that they pay for. They become overly critical and abusive of caregivers, at times even accusing them of being incompetent or stupid. Very often such abuse stems from the person’s frustration with their own situation and is more based in emotion than fact. Service excellence and positive attitudes become eroded by constant criticism, accusations and abuse.
At best, caregivers develop thick skins, toss the abuse over their shoulders and carry on for the sake of the income. At worst, the middle finger is raised as they walk away. Neither reaction is in the interest of the person that is being cared for.
For this reason, the contract between the caregiver and the person with an SCI must not only contain a service level agreement (SLA), but also explicit ground rules agreed upon between both parties. Competence and attitude must be measured against the SLA and the ground rules.
Articles that could assist include “Neurogenic Bowel” (Issue 1, 2019); “Pressure Sores” (Issue 2, 2016), “Fruits of Frustration” (Issue 2, 2018); and “Proactive Patience” (Issue 6, 2016).
The concerns
The low scores given to certain characteristics raised concern that respondents did not appreciate their importance. The most significant concerns are listed below:
• 58,5 percent of respondents considered passive movement exercises as not being part of the duties of a caregiver and 35 percent felt that exercises for the relief of muscle spasms in spasticity need not be included in the functions of a caregiver;
• 58,5 percent of respondents rejected management of fluid intake as an important attribute of a good caregiver;
• 41 percent believed it is not important for caregivers to understand the importance of dressing according to the prevailing climate;
• 32,6 percent of respondents did not believe that knowledge of autonomic dysreflexia is important in a caregiver, whereas 28 percent considered it to be vital for caregivers to know about it; and
• 56,4 percent of respondents rejected assertiveness as a positive characteristic of a caregiver.
References to articles in previous editions of ROLLING INSPIRATION are listed below each summary of the importance of the listed concerns.
• Passive movements
This is a daily routine of gently moving the paralysed joints through their range of movements. This prevents contractures from shortening the range of movement of the joints, which can complicate getting dressed and impact on your posture in your wheelchair. Passive movements are easy to do and well within the capabilities of a caregiver.
However, passive movements are very individual according to the needs of the individual. There are dos and don’ts involved, as well as potential dangers. It is recommended that your biokineticist or physiotherapist draws up a passive movement routine for you.
Learn more in “Move It” (Issue 2, 2016).
• Muscle spasms in spasticity
Apart from an increased muscle tone, spastic muscles can also cause uncontrolled rapid shaking movements known as clonus and more pronounced myoclonic jerks that can propel the person out of their wheelchair or send their duvet flying. These spasms can usually be relieved by gently shifting, repositioning or lightly stroking the limb.
Often spasms are a sign of discomfort such as a full bladder, a pressure sore, an ingrown toenail or an injury of some kind. There is also a close correlation between the causes of myoclonic jerks and autonomic dysreflexia. It is imperative that your caregiver knows how to relieve spasms and to look for underlying causes of discomfort – especially if the spasms are ongoing.
Learn more in “Managing Spasticity” (Issue 4, 2016).
• Fluid intake
A focus on appropriate fluid intake is extremely important. Low or inappropriate fluid intake can cause dehydration and, eventually, kidney failure. Appropriate fluid intake as a rule of thumb means at least three litres per day, of which at least 50 percent must be water.
Fizzy drinks, fruit juices and beer are packed with sugar, which, apart from not being great sources of fluids, causes sugar rushes and obesity. A further concern is that persons with neurogenic bladders tend to “run dry” to reduce the frustration and anxieties related to bladder management.
All of the above requires caregivers to have knowledge on fluid intake in order to support (and keep tabs on) the people they care for.
Learn more in “Food for Thought” (Issue 3, 2017).
• Weather-conscious dressing
Many people with an SCI, especially those with higher-level injuries, lack awareness about temperature or may even have adjusted temperature regulators that cause discomfort, such as feeling cold when it is hot. You know who you are … It is vital that your caregivers know how to accommodate your needs and preferences.
Learn more in “Body Temperature Management” (Issue 5, 2018).
• Autonomic dysreflexia (AD)
This is a complication of higher-level SCIs that is very debilitating and can be fatal. An added complication is that many (most) doctors don’t know about it or deny its existence. The triggers of AD are similar to those listed for myoclonic jerks under spasticity. Preventative management by a caregiver requires that they know about the condition.
A brief information document could be kept in the caregiver’s wallet or purse to give to the attending doctor if the person with SCI is incapacitated.
Learn more in “Autonomic dysreflexia” (Issue 6, 2018).
• Assertiveness
It’s a given fact that using a wheelchair doesn’t automatically turn us into angels. Caregivers need a good degree of assertiveness to deflect the poo we tend to fling at them. Compassion and gentleness are all good and well, but without a good dollop of assertiveness they will fold and walk away.
In conclusion, a good caregiver is not merely an employee – they become valuable partners in our challenging lives. We need to nurture them and entrust them with our challenges so that in times when we find it difficult to carry on, their support can help us face life again.
Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.
email: georgelou@medscheme.co.za
