Caregivers' & partner's needs & sexuality in laryngectomees & head and neck cancer patients

The caregiver's role and needs

Caregiver's needs and emotional burden

Being a caregiver for a loved one with a serious illness such as head and neck cancer is very difficult and can be physically and emotionally taxing. It can be extremely hard to watch the person they care for suffer especially if there is little that they can do to reverse the illness. Caregivers should, however, realize the importance of what they are doing even when they get no or little appreciation.

Caregivers often experience similar emotions and psychological strains as the person they care for. These include fear, anxiety and distress. They may fear the potential death of their loved one and life without them. This can be very anxiety provoking and depressing. Some cope by refusing to accept the diagnosis of cancer and believe that their loved ones illness is less serious in nature.

                                                   

Caregivers often sacrifice their own well-being and needs to accommodate those of the person they care for. They often have to calm down their loved one’s fears and support them despite being often the target of their vented anger, frustrations and anxieties. These frustrations may be exaggerated in those with head and neck cancer who have often difficulties in expressing themselves verbally. Caregivers frequently suppress their own feelings and hide their own emotions so as not to upset the sick person. This is very taxing and difficult. The caregiver is often the target and victim of the anger and frustration expressed by the patient which aggravate their own psychological well-being and ability to support the patient. 

It is very useful for the patient and their caregivers to openly and honestly talk to each other sharing their feelings, worries, and aspirations. This may be more challenging in those who have difficulties in speaking. Jointly meeting the health care providers allows for better communication and facilitates shared decision making.

Unfortunately, the well-being of caregivers is frequently ignored as all the attention is focused on the sick individual. It is essential, however, that the needs of the caregivers are not ignore. Getting physical and emotional support from friends, family, support groups, and mental health professionals can be very helpful. Professional counseling can be obtained in an individual setting or support group with or without other family members and the patient.  Caregivers should find time for themselves to “recharge” their own batteries. Having time dedicated to their own needs can help them continue to be a source of support and strength to their loved ones. 

Places where a caretaker can turn for support include:

• Family members or friends who will listen without judgment 
• Your church, temple, or other place of worship 
• Caregiver support groups at a local hospital or online 
• A therapist, social worker, or counselor 
• National caregiver organizations 
• Organizations specific to your family member’s illness or disability

Sites that can assist caregivers in finding a support group for patients with cancer are enclosed:

https://www.senioradvisor.com/blog/2017/04/30-resources-to-help-caregivers/

https://www.cancersupportcommunity.org/FindLocation

The patient's needs

Because treatment of head and neck cancer (radiation, chemotherapy and surgery) induces fatigue the caregiver may need to assume many supportive roles:

• Assist with daily errands and tasks such as shopping, doing chores or providing transportation to medical appointments.
• Help in preparing meals and feed the patient if needed.
• Assist in daily hygiene (taking a bath, washing hands etc)
• Assist in providing medical care, including administering oral medication.
• Help in managing administrative issues such as medical insurance reimbursement.
• Providing emotional support and assisting in obtaining professional help if needed.
• Accompany the patient to medical appointments and assist in making medical decisions about treatment and testing choices.
• Help in solving problem by exploring options and making decisions.
• Help in childcare responsibilities.

The caregiver's assistance plays a major and invaluable role in the patient's recovery and recuperation.

The impact of a total laryngectomy on the patient's spouse or partner 

Many clinicians focused only on the psychosocial impact of head and neck cancer on their patients. However, head and neck cancer has a considerable psychosocial impact on the patient's partners. The partner can experience an even higher psychological stress level than the patients which can hamper adequate care to the patients.

Healthcare professionals should include the partner in the support they offer their patients. The partners of laryngectomees often neglect their own psychosocial problems and consequently cannot provide support for the patient and are at risk of developing medical or psychosocial issues themselves. Healthcare professionals should, therefore, not only implement structural screening and treatment for patients, but also for their partners.

Laryngectomy can affect the patients and partners in a different way. Partners may develop anxiety, fear and concern about the potential death of the laryngectomee and feelings of irritation in social settings. Partners can sometimes become overprotective, which may have a negative impact on their relationship with the laryngectomee. Some partners may be more vulnerable to negative impact of the laryngectomy on their individual psychosocial well-being. These include female partners, those with a lower educational background and older partners.

Caregiver unmet needs included balancing competing roles/responsibilities, finding time for self-care, and creating effective strategies for supporting patient self-care. Most spouses and all patients reported increased conflict during treatment. Other relationship challenges included changes in intimacy and social/leisure activities. Couple based interventions that highlight the importance of managing physical and psychological symptoms through the regular self-care routines can be helpful for both patients and spouses. Similarly, programs that teach spouses ways to effectively encourage and inspire patient self-care may help to reduce conflict and assist couples navigate head and neck cancer treatment and recovery together as a team.

Discussing the consequences of the laryngectomy with the partner or partner and the family

It is important to discuss and prepare the patient's spouse or partner as well as family members for the consequences of the laryngectomy. A considerable number of laryngectomees and partners talk as little as possible about the laryngectomy because they do not want to upset others. Openly discussing the illness and its related matters in the family was found to be an important predictor of positive rehabilitation outcomes in head and neck cancer patients. The more open patients are to discuss their experience, the fewer negative feelings such as depression, anxiety and less loss of control are reported. Couples who do not openly discuss the illness should be offered support in order to improve their communication and indirectly improve their quality of life and possibly the quality of their relationship.

There is a substantial group of laryngectomees with feelings of dependency on their partner and that may overburden them. Both patients and partners should be prepared, as a team, by professionals, on the possible changes in their life after a laryngectomy. 

Communication and relationship issues

The relationship and communications of laryngectomees with those who are close to him/her may be difficult and challenging at times. Because of the laryngectomee’s difficulties in expressing their emotions through speech, and the trouble they may have in speaking, those close to them may have a hard time to understanding what they are truly trying to convey. This may lead to misunderstandings, conflicts and mutual anger toward.

The laryngectomees  may become frustrated because they are misunderstood, and develop anger at times. Those close to laryngectomees may misread their true feelings and what they are attempting to express.

It is advisable that these issues are discussed calmly and openly, so that each participant can explain what they are going through and feeling. Professional help from social workers, therapists or psychologist may be helpful in resolving such issues.  

 

The impact of laryngectomy on sexuality and intimacy 

The loss of sexuality and intimacy between the laryngectomee and their partner can add a profound burden that is often magnified by the lack of discussion about this topic. Sexuality and intimacy should be addressed in the screening and management of both patients and their partners. The decreased frequency of sexuality, as well as the experience itself need to be dealt with. Issue that may affect sexuality include concern about respiration problems during intercourse, shame related to the stoma and disfigurement and the feeling of not being a complete man or woman anymore. Disfigurement and dysfunction as a result of the cancer and its treatment can cause individuals to feel less attractive. Patients and their partners should be encouraged to discuss issues about sexuality and intimacy. Unfortunately, some clinicians find it difficult to address these topics because of a lack of time, experience and preparation.

The first step in addressing these issues is for the medical professional (physician or nurse) to talk to the patient and their partner about these intimate issues. A trained and experienced professional should listen to the couple, and provide information, advice and psychological support. Based on screening and clinical judgment they may choose to refer the couple to a specialized social worker or psychologist.

Sexuality should receive special attention in young laryngectomees. These individuals generally have higher expectations of their sexual functioning, and often experience more negative impact of the laryngectomy on their sexual relationships than older laryngectomees. Specific attention should also be paid to other vulnerable persons, which include female laryngectomees, those with a lower educational background and laryngectomees with co-morbidity. These people are more at risk for a negative impact of the laryngectomy on their spousal relationship.