**7. Integration of basic palliative care in the Romanian general practice**

The majority of the incurable ill patients can be treated within primary care health professionals, and 10–15% will be in need of specialist palliative care (PC) [88]. Family physicians' role in primary palliative care and cooperation between specialist palliative care services should become stronger. Palliative care has expanded since its relevance for non-oncological diseases has been widely acknowledged and integration of PC at an earlier stage in the disease process has been shown to be beneficial [89].

The real palliative care extent in primary care is underestimated since the estimates of an average care by family doctor for three to four patients with PC needs per quarter do not appropriately reflect care for patients with non-oncological conditions [90]. There is a predominance of non-oncological chronic multi-morbid

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

healthcare needs (19.8%) is estimated to be in the USA [75].

in the telehealth group [74].

and adherence acceptability [76].

technology related.

various levels of expertise.

Telemedicine and telehealth devices can improve and facilitate care in children with medical complexity. A single-centre nonblinded randomized clinical trial based on tracheostomy status demonstrated that the group utilizing a telehealth device obtained better results. Thus, at a device connectivity of 96% of the time and image and sound quality acceptable in 98% of visits, hospitalization rate was lower

Improvement of care in children with complex medical conditions has increased survival, contributing to a continuously rising percentage of paediatric population with chronic healthcare needs. The highest prevalence of children with special

The technical problems encountered were, as expected, both human related and

The positive results consisted of decreases in hospitalizations, quicker recovery and reductions in unplanned hospitalizations. No significant changes were recorded in emergency department visits or hospital admissions and in health-related quality of life. Family members reported overall high satisfaction scores with digital health interventions, and parents perceived availability of digital health to be "very important" in assisting them in managing their child's condition at home [77]. Some of the programmes actively involved families in the development, testing and refinement of the intervention. The results were encouraging, with the development of educational materials that were acceptable and useful to parents [76]. An important issue in telemedicine is the evaluation of the technologies available to families. A response bias may be linked to the gap existing between Caucasian and minority populations. Some interventions supplied equipment or internet services to families [78]. Technical issues, affecting digital health interventions, consisting mainly in disruption in connectivity did not alter overall satisfaction for clinicians, management and patients [79]. Even if most of the studies reported a favourable feedback, digital health was not always appropriate. Therapists had difficulty engaging with younger children with hearing loss during videoconferencing appointments, social workers preferred in-person appointments to facilitate a personal connection with patients, and some parents considered that face-to-face demonstrations of clinical skills were mandatory for optimal treatment fidelity [70]. Funding is an issue affecting digital health because of the restrictions related to reimbursement. Up to 36% of booked telehealth appointments are not billed by a faulty system [80]. The use of digital health to care for children with medical complexity is a modern way to connect patients, some in remote areas, to expert care from health professionals while lowering the expenses and avoiding potential harms of the

The programmes were aiming to provide patient care or replace in-person assessments. Telemedicine was delivered by a multidisciplinary team or nurses with

Introduced mainly to reduce the need for urgent care leading to recurrent emergency department visits and hospital admissions, synchronous digital health technologies are expected to improve parental caregiver outcomes such as quality of life, psychological health, satisfaction with care and social support. As expected, the majority of the papers on this topic originate from the USA and Australia. The explanations lie in the higher economic level but also in the necessity to cover by telemedicine remote areas with few inhabitants [76]. Feasibility-related outcomes were conducted on haematology/oncology/palliative care populations, autism spectrum disorder, asthma or mental health issues and included assessing acute clinical issues, providing psychosocial support, facilitating case conferences, providing routine care and follow-up, delivering therapy and monitoring progress

**134**

hospital-based care system.

patients such as cardiovascular or pulmonary diseases in need of PC in general practice, and these recipients require a valuable involvement of the informal caregivers from their families [91]. Despite the widely acknowledged importance of family doctors' engagement in primary PC [92], difficulties and even barriers were identified in the delivery of home-based PC in practice in our country as well as in the high-developed countries [88].

In a project developed in Romania in 2013–2016 by the Hospice of Hope, Brasov, with the financial support from the Swiss contribution to the enlarged European Union, barriers and ways to integrate a pilot model of basic palliative care in the healthcare system were identified [93]. Hospice of Hope, Brasov, is a Romanian non-profit organization, Centre of Excellence in PC for Eastern Europe and Central Asia, and one of the seven globally recognized models of palliative care. It develops palliative care at national and international levels through information, by improving the legislation in the field and through educational programmes dedicated to professionals, recipients of PC and family as provider of home-based PC.

The impediments in the delivery of primary palliative care refer to:


Nationally, approximately 150,000 people with oncological diagnosis and other incurable diseases need home-based palliative care every year, but less than 7% of them benefit in a timely manner. During the project, the model of basic palliative care was tested in 4 pilot counties, on 26 family doctors trained for 6 months to provide palliative services to a number of 138 oncological patients treated at home. A guide of basic palliative care was developed and offered to the family doctors, contributing to the replication of the model in other counties and to the training of the community nurses and informal caregivers.

Adopting the model of providing basic palliative care through family doctors can increase in the coming years, contributing to the palliative care needs assessment after diagnosing the incurable disease, not only in the end of life, and through specific interventions to increase the quality of life of these recipients in the community.

Basic or primary palliative care includes the following:


**137**

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

• The burden of care assessment and interventions to protect the health of the

• Clarification of aspects related to obtaining socioeconomic rights for people

The family caregivers' role in the management of spiritual pain caused by feelings of helplessness of life with disease is essential. It needs to be recognized and addressed by the primary healthcare professionals, offering psychological and spiritual support and elevating the self-esteem of recipient from the stable stage onwards. Providing home-based palliative care that maximizes the self-determination of patients depending on patient-centred needs and preferences through communication is important. Prioritizing the home care needs may differ depending on individual perspectives which make mediation of different opinions through open communication between home care multidisciplinary team, recipient and family caregiver to be pivotal. With increasing aging population, keeping living and functioning the chronically ill on long term with current means of treatment, it is anticipated that the proportion of people who should receive PC will increase considerably [89, 94, 95]. An intervention package for the primary PC, such as that proposed in Germany in a study protocol of a research study of the organizational health services with three mixed methods [88], tailored to each country in its context of healthcare, should enable primary healthcare professionals to provide primary PC to their recipients in accordance with their professional standards that address barriers and involve family caregivers in the home care of loved ones.

**8. Future family doctors' resourcefulness to meet the societal changes and the burden of home care in the modern family: academic medicine** 

Due to demographic changes, with increasing number of people in need of care and societal changes (decreased family size, more geographically dispersed families, erosion of barriers that previously could have kept couples together during difficult times, erosion of bonds between family generations, increasing number of people living alone), informal care structures are affected by considerable challenges [96]. In addition, the increase of urbanization, the rural-urban movement and the international migration profoundly affect the family structure and its involvement in providing long-term home care and providing a supportive environment. Family caregivers involved in home care often face the challenge of balancing caregiving and job responsibilities. Involving older adults in caring for the elderly and children with disabilities and integrating informal caregivers, such as friends and neighbours, is valuable and requires strong intergenerational solidarity in the community. However, in low- and middle-income countries, chronic patients who seek support for maintaining independence and quality of life are often faced with a lack of health and social services, especially in rural areas, or in-home care with poor quality. The availability of both in-home services (such as personal care and home healthcare) and community services (such as day programmes, congregate meals and social centres) enables a growing percentage of older recipients to delay or even avoid institutional care [97]. The shortage of formal and qualified caregivers presents a challenge for the future regarding the structure and organization of long-term care for most countries. The increasing number of care-dependent people leads to a high economic burden for most healthcare systems [98]. In order to support and facilitate family caregivers in their role of nursing, it is important to

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

diagnosed with incurable disease

family caregiver

**perspective**

• Treatment of symptoms due to chemo- and radiotherapy and their complications

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


The family caregivers' role in the management of spiritual pain caused by feelings of helplessness of life with disease is essential. It needs to be recognized and addressed by the primary healthcare professionals, offering psychological and spiritual support and elevating the self-esteem of recipient from the stable stage onwards.

Providing home-based palliative care that maximizes the self-determination of patients depending on patient-centred needs and preferences through communication is important. Prioritizing the home care needs may differ depending on individual perspectives which make mediation of different opinions through open communication between home care multidisciplinary team, recipient and family caregiver to be pivotal. With increasing aging population, keeping living and functioning the chronically ill on long term with current means of treatment, it is anticipated that the proportion of people who should receive PC will increase considerably [89, 94, 95]. An intervention package for the primary PC, such as that proposed in Germany in a study protocol of a research study of the organizational health services with three mixed methods [88], tailored to each country in its context of healthcare, should enable primary healthcare professionals to provide primary PC to their recipients in accordance with their professional standards that address barriers and involve family caregivers in the home care of loved ones.
