There was only one caregiver available for this case pilot project who was conveniently chosen as she took care of her husband when he was discharged from the hospital. The caregiver is a middle-aged woman who takes care of her husband living in a sub-urban area within the greater Suva Area. She takes care of her husband alone who has a limb amputation, a diabetic, has a history of past cardiac surgery, and complains of short breath. She lives with her husband and two grandchildren, one of whom is a disabled child attending the Hilton special school.

The caregiver has been caring for her husband for a year now, and since the amputation has taken place both her children have moved out to live on their own. They do not visit them or provide any form of support, they do not drive and they depend on public transport if they need to go places.

The second caregiver had opted out of the study due to personal reasons. The participant signed a voluntary consent form after a verbal explanation of the purpose of the research was highlighted to her in her own language.

Data collection took place at the participant’s residence maintaining confidentiality and privacy during the interview. A structured interview guide was used during the interview in the Hindi language. The interview took about 60 minutes to complete as we needed to prompt the caregiver sometimes to completely understand the answers she had given. She would also stop as she would feel emotional while discussing the events of the amputation and the caregiving process. Data saturation was gained as the caregiver had no new information to give to all the questions in the interview guide.

The one-one interview was audiotaped and later transcribed from the participant’s language to English by two members of the research team. Ethical approval was sought from the FNUCHHREC (127-22), a faculty approval was also gained from the Medical Superintendent and the Director of Nursing at the Colonial War Memorial Hospital (CWMH). This process allowed the researchers to gain access to CWMH to obtain participants’ residential addresses and phone contacts of the participant’s residence to collect data from caregivers of amputees.

One participant agreed to take part in the pilot study and one-one interview was conducted, audiotaped and transcribed verbatim including all notes and observations taken during the interview. The transcriptions were read several times by two researchers, then the principal investigator and another member had read the analysis to ensure reliability and consistency of the transcriptions. The themes were then coded, highlighting the key concepts. The codes were then grouped into similar themes which were organized into categories, then into meaningful clusters. Data coding was done for the interview, and a unique number was given to the participant.

The participant felt sad that there was no one else in the house to take care of her husband who had suffered a loss of the lower limb due to diabetes causing significant disabilities [18]. Her children had left the house to live on their own leaving their mother to be the sole caregiver for their father during these difficult times. Caregiver burden increases significantly when there are other comorbidities suffered by the amputee leading to more stress and increasing the caregiver’s mental and physical health [1], relatives are always willing to support the amputee, never leaving them alone and ensuring all tasks are carried out efficiently [19].

Participant mentioned “Istayhomeandlookafterhim, fornearlyoneyearnow, aftertheamputation, heisverysickly”

“Wedonothaveanytransport, wemustdoeverythingbyourselves, asoursonsarenotwithusanymore, andwehavetotakecareoftwograndchildren”

“Yes, Idogettiredandangryforwhathashappened, mysonsarenotwithus, whenweneedtogoforcheckingwehavetocallataxithenthedrivertakesus”

“Relationshipisbrokennowafteramputation, feelslikeifyoudonothavealeg, youdon’thaveanything, weweredependentonhim, wearealsolookingaftertheothertwokids”

Continuous support from the health professionals is greatly needed that will reduce the burden of the caregiver who has to travel to the health center to attend clinics and get wound dressing changed, relieving caregiver burden while caring for the person with amputee. Health professionals should also ensure that a proper supply of dressing materials is available for the caregiver in case of emergencies.

The caregiver faced changes in her responsibilities that she had to take care of the husband who was once the breadwinner for the family. She felt responsible in caring for him, mostly left alone to do all the required activities for the husband adding to the physical stress incurred by the caregiver [19]. The role of caregivers is intensified when they must support their relatives with multiple disabilities, and the chronic illness they suffer from, spending substantial amount of time [20]. The patient’s medical needs and the various visits to health care increase the burden of the caregiver [9]. Caregivers usually encounter a range of positive and negative experiences and differences in roles they play when they care for their relative’s following amputation, often unpaid and untrained to take up the job of a caregiver [21]. They have various activities to carry out such as administrating medications including the hassles of medication administration to a patient who resists the medication, likewise, bathing a patient who is resisting a bath.

The quality of life of an amputee is altered resulting in negative somatic and functional impact and psychological functioning following amputation [8][22], leading to increased dependence with physical limitations and significant alterations in the individual’s performances [1][8], doubling the need for caregiver assistance in the activities carried out for the amputee. The caregivers’ responsibilities are various, including the complexity of events which lead to stress. When they must serve a reluctant patient their meals, or medication, for instance having to crush the tablet or giving an injection which the caregiver is not familiar with can cause enormous amounts of frustration and stress to the caregiver.

As eluded by the caregiver that “heusedtoearnandfeedusforsolongbutnowheissittingathome, andwemustlookafterhim”.

“Istayathomeandlookafterhimfornearlyoneyearnow, aftertheamputationhehasbeenverysickly, hehashadheartsurgery, haswaterinthelungs, hasshortnessofbreath”

“Sometimesithappens, andwehavetotakehimtothehospital, butwehavetodoeverythingourselves”

Upon discharge, the caregivers need to be trained sufficiently to be able to provide the care needed by the amputee. Respite care could also be planned for such patients who have commodities such as lung and cardiac diseases. Therefore, it is recommended that continuous support and teaching is provided to the caregivers during the home visits by health professionals.

She has a granddaughter and grandson who live with them. One of them is a disabled child and attends the special school in Suva. Making critical decisions for the patient can also be stressful [23], when the patient experiences negative perceptions about the amputation, leading him to feel burdened on the caregiver [24].

“NowIputhimonwheelchair, andhecangotothewashroombyhimself, beforehecouldnotgoalone, Ihadtotakehim”

“Hehascrutches, butisdifficulttouseit, becauseofthestepsinthekitchen. Nowhislegisgettingbettersoit’sabitbetter.” She continues to speak: “Inthemorning, hebrusheshimself, Ihavetoputthecoffeetableinthebathroomforhimtoshower, Iwashhisclothes, andIdresshimaswell”

Proper training needs to be provided to caregivers on how new equipment is used, this can support the patient better, relieving them of extra pain and frustration.

The participant mentioned feeling weak and tired herself when caring for her husband, neglecting to care about herself, unable to devote enough time to rest in between the work she does. Participants in a study reported not having time to join events which lead them to acquire emotional stress [25]. Economic status, social lives and relationships are usually affected when someone cares for people with chronic disabilities [9]. The need for mental health and psychological support for caregivers was mentioned by [1]. [8] also mentioned that above knee amputation placed huge burdens on caregivers leading them to depression when they take care of these individuals for a longer period incurring huge caregiver burden. Caregivers often face emotional, physical and financial burden when they care for patients with amputation or chronically ill relatives [7].

The participant mentioned that she was unable to visit her relatives and friends due to the illness her husband has suffered, and caring for him has distanced her from most of her relatives and friends. Informal caregivers usually are the sole provider for the amputee in terms of physical and emotional support, leading the caregiver to stress, fatigue and social isolation [1].

As per the verbatim below:

“No, Ican’tgoanywhereasIdonothavetimetogototheneighbors. Evenwedonotgotomyfamily’shouseanymore. Evenifsomeonepasses, wecannotgoaswedonothaveanytransportation”

Amputation results in greater dependence on others resulting in the duty of care significantly increased whereby caregivers are restricted to social life losing contact with relatives and friends [1]. Moreover, the caregiver reported that relatives did not visit her due to the increased responsibility she has been placed on.

Shealsomentionedthat: “Ialwaystellmykidsthatnowwedonothaveanyonearound”

“Oneofmylegsisalsobad, andIcan’twalkverywell, butnobodyisheresoImustlookafterhim”

“Idon’tgoanywhere, Ihavenotimetogotomyneighborsandtomyfamiliesandwhensomeonedies, Ican’tevengotheirfuneral”

“It’sabitdifficulttolookaftermyhusband, likeImustbeworkingthewholedaythenIneedtocookandfeelhimandgivethefoodontime, andgivehismedicationsontime”

It is vital that respite care is provided for the caregiver as health care professional could plan care for the amputee out the house, bring them to the rehabilitation center, teaching them basics techniques such as new equipment, and encouraging them to be independent.

Lack of knowledge results in poor care and prognosis, caregivers should be trained to take care of their loved ones upon amputation. The caregiver mentioned that she did not receive any help that could improve the care she provided for her husband. Providing psychological support to the amputee affects them positively [8] which the caregiver could not provide due to lack of knowledge and expertise. Caregivers need to be empowered by the health care team to support them during the process to ensure patient safety and adherence to medical treatment [1].

As the participant mentioned that “nowwhennobodyishere, Ihavetolookafterhim”

“IdowhatIcandoforhim (Husband) Iworkhardanddoeverythingontime”

“Diabetescenterinformedmeabouthisfood, howtocontrol, togivethemedicationsandtheinjectionoftime”

Proper training needs to be provided to caregivers prior to discharging the patient home, ensuring that the caregivers are competent in the care they must provide for the patient.

The participant mentioned not having enough training that would enable her to care for her husband efficiently. Proper training is essential for the caregivers as they have never done this type of care, they need to be taught about how to carry out certain activities such as lifting from the wheelchair and transferring the patient around. Inadequate knowledge and skills in providing care for the amputee can lead to wrongly administered medication for instance. Proper training should also be provided in terms of where the family caregiver could look for more resources, and how to best utilize the available resources. Sufficient resources play an important role for the caregiver to provide care to the patient [9].

When the patient is discharged from the hospital, the caregiver should be able to interact with the health care professionals in the hospital setting or the nearest health center to coordinate with health professionals to reduce the caregiver’s burden [4]. Moreover, effective discharge planning will assist the caregiver to get back to the health care professionals with any information they need regarding the care of the amputee.

“Whenit’shisclinic, thentheydocounselingatthediabeticcenter”

“Thetrainingisnotenough”

Continuous support and training will assist the caregiver with the different activities they need to provide for the patient. Caregivers need to be continuously