**2. International validated tools for the family assessment in primary care**

Home care is the health or social service provided by formal and informal caregivers for the recipient who cannot go to the general practitioner (GP) surgery or to the other levels of health services. Eurostat data from 2016 show that 20% of households needed to use professional home care services. The rate of use of home care services is very different: 88% in Luxembourg, 58% in the Czech Republic and only 6% in Romania [14]. Evaluation of the family as recipient and provider of home care comprises four domains: demographic facts, psycho-emotional domain, environment aspects and family burden as caregiver.

#### **2.1 Demographic facts**

Information about the family's structure, number of members, education, employment status, living place, family network and members with chronic illness or with disabilities are obtained using a self-administrated questionnaire or an interview. Genogram is a brief tool that should be used in the home care consultation, a system helping to identify the vulnerable recipients in the family. This graphic representation includes all family members, alive and deceased, unrelated persons living in the same place, their relationships, hereditary or recurrent illness, drug addiction and issues related to the elderly or child neglect and abuse [15].

The Resident Assessment for Home Care (RAI-HC) was developed following a high demand for a standardized evaluation of the patient's needs through a comprehensive home care system. This instrument addresses frail elderly and patients with chronic

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

one in eight people will be 65 or older by 2030 [6].

**1.1 Family as a recipient of home care**

identify an informal home caregiver to work with.

**1.2 Family as provider of informal home care**

growing trends will be influenced by higher rates of fertility and migration. Higher age is associated with higher morbidity, which in turn affects care dependency [3, 4]. Prognosis regarding the number of people in need of care shows an increase of 115% in the European Union between 2007 and 2060, and the number of people in need of care in the USA is expected to double from 13 million in 2000 to 27 million in 2050 [5]. Experts anticipate that older adults will comprise 13% of the total population—

The healthcare system is changeable and unsteady; the period of hospital admission is limited by the high costs, and the trend is to continue the long-term management by the formal and informal home care providers. The chronically ill patients feel rushed from the hospital and worried because they do not have adequate care in the community, especially in rural areas. Patients are discharged with drainage tubes, urinary wells, nasogastric tubes, open wounds and insufficient pain control, and family members are unprepared for the needed care in these complex contexts. In addition, they face limited money and consequences related to their work and childcare. To meet the current challenges in the home care of the frail elderly and children with disabilities, it is a requirement to strengthen the role of informal caregivers [7].

The family as a recipient of home care has a lot of worries with possible unrealistic expectations. Sometimes, patient's family members are upset, unresponsive or hostile to the home care team. The family is the hidden patient, sometimes acting as a dysfunctional, unsupportive family, with a high perception of the burden of care. Primary care professionals should identify these families that require evaluation and specific interventions to become effective while maintaining their full health status and functionality. Family physicians and community nurses are called upon to build trust, making it clear to the family that they are available to them, explaining the plans of care after discharge, resolving any miscommunication and diminishing concerns about caring for their loved ones at home. These are the persons who they trust, with whom they had the continuity and the relationship. Primary care professionals have an ongoing history with patients, building an agreed relationship over time even in difficult times of an advanced chronic disease or end-of-life care. They need to verify the recipients and his/her family feelings, let them know that they will be listened to and their concerns understood and try to

Family caregivers as informal home care providers have an essential role in ensuring the care of the frail recipients at home [7]. Informal caregivers are defined as individuals who are actively and directly involved in the recipient's home care and who repeatedly support and assist with care, without being paid. They provide ongoing assistance with activities of daily living (e.g. toileting, feeding, bathing, walking, clothing) or instrumental activities of daily living (e.g. meal preparation, housecleaning and managing finances), for individuals with a chronic illness or disability [8, 9]. The primary caregivers, most often the family members, are usually people who are not trained in the process of care and are unprepared for facing difficult situations, making the negative impact stronger in the family evolution. The majority of the general population wishes to stay at home in old age and would prefer to receive informal care from their adult children or formal care from home assistance services [10]. However, the decision of family members to take care of a dependent person, and thus fulfilling his/her wish to age in a domestic environment, is influenced by the

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diseases and disabilities. Although a 60-minute duration of the evaluation may be a disadvantage, this tool offers a comprehensive analysis of the recipient, informing the home care provider about demographic characteristics, nutrition, health behaviours, types of diagnosis, functional and cognitive status and health instability (frailty).

The Resident Assessment for Palliative Care (RAI-PC) is an instrument that evaluates the symptoms most commonly seen in palliative care patients: pain, dyspnoea, fatigue, mental capacity, cognition, overall physical tonus and capabilities for self-care.

The needs of the palliative patient, his/her family and the caregivers are constantly changing, which leads to the need to regularly apply RAI-PC, both to the patient and to his/her caregivers.

The shorter duration of the evaluation by RAI-PC is appropriate for the palliative patient and his family. In addition, an important feature of this tool is its quality to evaluate the effectiveness of many types of interventions, establish a comparison between interventions and provide information for cost-effective management of the patient with palliative care needs.

### **2.2 Psycho-emotional domain**

The old age, female gender, long-term provision of home care and type of illness are predictive factors for the emotional stress of the family caregiver [16]. Early identification of high-risk psycho-emotional pressure enables effective interventions of GPs and community nurses. The Family Relationship Index (FRI) is the family relationship assessment tools, developed by Holahan and Moos in 1983. Through its three scales, it explores family cohesion, expressiveness and conflicts, helping the professional home care team and collaboration [17].

#### **2.3 Assessing the need for family support as home care provider**

The support needs of family as caregiver refers to the environment/habitat, financial support, help for nursing techniques, the level of preparedness for the caregiver role and educational needs for the caregiving process.

#### *2.3.1 Family social support need*

The Oslo Social Assistance Scale (OSS-3) assesses people close to the patient, how much they are concerned about home care and who the recipient would ask for practical help if needed [18]. Another aspect of the social support refers to the financial well-being of the family. In 2006 Prawitz developed the Financial Distress/Financial Well-Being (IFDFW) tool which evaluates the perception and concerns about family financial status. The low score shows the high level of financial distress, leading to an increasing deterioration of health [19].

#### *2.3.2 Preparedness of family for the caregiver role*

The Preparedness for Caregiving Scale (PCS) described by Archbold, Stewart, Greenlick and Harvath, in 1990, is an instrument with eight items that ask family caregivers how much they are well prepared for the challenges of caregiving. The lower score signifies the poor preparedness for the caregiver role [20].

#### *2.3.3 Family caregiver burden*

The caregiver burden is a negative experience perceived by the person involved in the long-term home care. The Burden Scale for Family Caregivers (BSFC) is a

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*The Family as Recipient and Provider of Home Care: A Primary Care Perspective*

useful tool, assessing the subjective burden perceived by the caregiver in home care. In Romania, GP involved in home care identifies the family caregiver's burden only by a holistic evaluation, without using an instrument for the burden of care assessment. The BSFC instrument started to be used in Romanian primary palliative care research. Measuring the burden of home care allows early interventions for family

**3. Interventions provided to the family caregivers by the primary** 

The psycho-educational interventions provided to the family caregivers are focused on the preparedness of family for the caregiving role, help for emotional reset, encouragement to identify the positive aspects of this experience, promotion of self-care, respite care and advising for new problem-solving strategies. There are different forms of psycho-educational intervention: individual session face-toface, focus groups and e-learning programme with an online professional teacher. A useful method is the family meeting, having the following advantages: provides training of caregiver for proper nursing technics, facilitates discussions about the disease' prognosis, updates the home care goals and establishes a concordance between care goals and the recipient's desires. In addition, it is a good moment to share the patient's preferences, to reduce stress, anxiety, depression and emotional changes in end-of-life care [21]. The principles for conducting family meetings are clarifying targets of care, refreshing the knowledge about the disease, anticipating future challenges and offering solutions in accordance with the family needs [22].

Social support is defined as the existence or availability of people on whom individuals or families can rely on difficult times. The support interventions for family caregivers include groups or individual sessions, being conducted by professionals. Group-based support is the most common form wherein the whole family participates, including the patient. In this method experiences are shared, leading to positive changes regarding the personal confidence, acceptance of the family caregiver role and adoption of new coping skills [23]. Applying flexible and individualized forms of support interventions helps reduce the burden of caregivers and increases the knowledge about home care and ability to cope with difficult situations [24].

**4. Home care interventions delegated to the family caregivers**

The physical domains of home care such as hygiene of the recipient, proper mobilization of the patient in bed, daily chest massage and oral cavity cleaning are daily medical manoeuvres which are delegated to the family caregiver by the GP. Family caregivers' education about the treatment is mandatory and implies the administration schedule, onset of action, routes of administration and possible side effects. The fulfilment of the treatment plan involves the following interventions: (a) medication administration by different routes (oral, rectal, percutaneous, enteral or using a nasogastric tube) and (b) monitoring of symptom control by

*DOI: http://dx.doi.org/10.5772/intechopen.91926*

caregivers and secondary prevention.

**healthcare professionals**

**3.2 Supportive interventions**

**4.1 Physical domain**

**3.1 Psycho-educational interventions**

*The Family as Recipient and Provider of Home Care: A Primary Care Perspective DOI: http://dx.doi.org/10.5772/intechopen.91926*

useful tool, assessing the subjective burden perceived by the caregiver in home care. In Romania, GP involved in home care identifies the family caregiver's burden only by a holistic evaluation, without using an instrument for the burden of care assessment. The BSFC instrument started to be used in Romanian primary palliative care research. Measuring the burden of home care allows early interventions for family caregivers and secondary prevention.
