Family Centered Care : A Promising Social Collaboration for Improving Neonatal Health Outcomes (FCC)
Dr. Ram Manohar Lohia Hospital and PGIMER, New Delhi, India

A. Problem Analysis

 1. What was the problem before the implementation of the initiative?
Failure to achieve target MDGs have prompted alternative strategies to be innovated and adopted. Strategic India Newborn Action Plan (INAP) that aims to reduce neonatal mortality to “single digit” by 2030 is one such step. With newly institutionalized SNCUs created at each district level across the country, challenges lie not only of saving lives but also to improve quality of care at these facilities. Additionally atleast 10% of these high risk babies die after discharge. Universal problem of suboptimal neonatal staff ratios in a health facility setting has been closely linked to overburdening of staff, low compliance with aseptic routines, resulting in compromised quality neonatal care. The health care delivery system is typically a provider centric model of care where delivery of care is primarily by the nurse or doctor with minimal or no participation by the family in either care giving or decision making. The competence gap between skilled provider (doctors and nurses) and the "unskilled" parents/family members creates communication barrier resulting in authority, control, and power exercised by the providers. Parents/family who already face separation, fear, anxiety, and stress that are associated with sickness and hospitalization of their little ones further develop unmet needs of information, guidance, and support resulting in further mounting of stress. Another outfall of a provider centric model of care is that the developmental needs of a sick neonate as well as psychosocial needs of the family invariably get missed. This is so because the providers challenged with inadequacies in numbers and are constantly coping within limited resource settings to deliver ‘essential optimal medical care’. The usual outcome with this model of care is a compromised quality of care with lack of work satisfaction on provider side. The receiver client who at best has assumed a role of a passive receiver in silo comes out with also not so good a health care experience after all. The situational paradox is that this Parent- attendant is the sole primary care provider for this vulnerable baby at home after discharge and because they relatively lacking skills there are often fatal delays in recognition of sickness. Thus there remains a huge gap between facility and home based newborn care. Thus it is proposed to: • To improve quality of care including non medical aspects of care such as developmental care for a sick newborn at health facility • To improve healthcare experience of families of sick newborns admitted at health facilities • To address the issue of health workforce shortages in delivery of sick newborn care • To provide a mechanism to provide continuum of care

B. Strategic Approach

 2. What was the solution?
• Through an innovative approach of Family Centred Care (FCC) that aims to develop and nurture family's role (in partnership with the health care team) in essential care giving skills for their young infant throughout the period of hospitalisation. • By getting the baby back in the family’s embrace, FCC creates an environment in nursery that is developmentally supportive for the sick baby while being responsive to psychosocial needs of the family with an overall better health care experience for all. • Through worksharing FCC not only improves quality of care in the facility, but serves as a cornerstone for providing a continuum of care at home after discharge.

 3. How did the initiative solve the problem and improve people’s lives?
Using the innovative approach of ‘Family Centred Care (FCC) for Sick Newborn’ in a health facility setting. FCC centres around building capacity of the accompanying parent/family in essential care giving skills for their young infant. This is achieved with help of an operational, culturally sensitive, indigenously developed Audio Visual Training tool. • Scope of mothers involvement: Skills and knowledge imparted to mothers/families include those related to o Entry protocol (especially hand washing), o Developmentally supportive care (cleaning, sponging, positioning, nesting etc, Breast feeding, expression of breast milk and assisted feeding). o Kangaroo mother care. o Preparation for discharge and care at home including recognition of danger signs. • Thus through FCC as an approach, baby receives individualized additional care (by his/her mother/parent) that is developmentally supportive and delivered in addition to the standard care provided by nurses-doctors. This way not only the quality of care improves but also the developmental needs of a sick baby too are addressed. • Through collaborative partnership in decision making and care of their own baby, transparency and open communication that typify FCC, an environment is created that is culturally sensitive and responsive to family needs .This way not only their psychosocial needs of information, guidance and support are addressed but their separation anxiety and stress are allayed to a great extent. • As a result of Capacity building and involvement in care throughout hospitalization, parent attendant emerge with competencies to provide continuum of care at home. They are also capacitated to timely recognize danger signs to seek medical attention in case baby falls sick. • Work sharing in FCC through parental participation to aid care delivery by the staff allows better allocation of resources. Benefits Accrued: Family Centered Care during hospitalization of a sick neonate has favorable impact for all stakeholders. • Impact on neonate: This intervention improves both short & long-term health outcomes of neonates. o Short term: improves exclusive breast feeding rates before discharge and decreases length of stay of babies. o Long term: serves as a cornerstone for continuum of better post discharge care at home resulting in fewer re-hospitalizations and better overall growth and development of the infant. • Impact on family: FCC improves parent infant bonding, family satisfaction through better information, support and effective communication with the health care team. • Impact on health care provider: Deburdens the staff allowing better quality of care and allows better allocation of resources addressing the problem of human resource for health (HRH). Outcomes • Improved quality of care for sick newborn at facility. • Overall improved healthcare experience of families of newborns admitted at health facilities. • Worksharing allows partly addressing issue of health workforce shortages. • Continuum of care at home after discharge. Impact of FCC: • Bridge gap between facility and home based newborn care. • Enhance society’s capacity to act for improving newborn health and thus holds promise for affecting a sustainable health care solution in our country. Hence this proposed new social collaboration between the health care provider and the family through FCC will enhance society’s capacity to act for improving newborn health of our country. This new paradigm approach in health care delivery system through empowerment of the receiver client truly seems to hold a promise for affecting a sustainable health care solution in our country.

C. Execution and Implementation

 4. In which ways is the initiative creative and innovative?
Basing on the premise that family is the prime in a child’s life and that a parent is the one most concerned about wellbeing of their sick neonate FCC concept is innovative in the following ways: 1. Empowering and involving parent/family (who hitherto forth was only a passive receiver of care in silo) as an active partner in health care delivery for their own hospitalised sick baby. 2. Family-cantered care reflects a shift in traditional focus from only the medical aspects of care of a sick neonate to a wholesome care where a sick newborns developmental needs as well as families’ psychosocial needs too are addressed by their being actively involved. 3. All skill building initiatives in health care systems focus on health care providers. In family centred care we focus on building capacity of the accompanying parent/family through an operational, culturally sensitive, indigenously developed Audio Visual Training tool’

 5. Who implemented the initiative and what is the size of the population affected by this initiative?
Dr. Ram Manohar Lohia Hospital, New Delhi where the concept of “Family Centred Care for sick newborn” FCC was innovated, researched and originally practiced FCC. Now, the institute has been recognized as a National Technical Resource Centre for Family Centred Care of Sick Newborn. With approval and recommendation of GOI MOHFW, Norway India Partnership Initiative (NIPI) undertook the pilot implementation in 5 districts of 4 states namely {Alwar (Rajasthan), Hoshangabad and Raisen (MadhyaPradesh), Jharsuguda (Odisha), Nalanda (Bihar)}. An MOU was signed between RML and NIPI with UNDP as implementation partner for this pilot in May 2015. A National Training of Trainers was conducted in August 2015 at Dr R.M.L Hospital to train national trainer pool from these representative districts. Until March 2016, 2,209 mothers/ parents had received FCC sessions in these four state districts. (http://www.nipi.org.in/wp-content/uploads/2016/08/39.pdf) Thereafter following the success of FCC in these state districts the states of Rajasthan, and Madhya Pradesh and later Odisha upscaled the program to all their state districts (33 and 52 , 30 or so respectively) by early 2016. Currently the population of these 115 districts and 118 SNCUs is covered under FCC implementation. Recently Government of Andhra Pradesh has expressed keenness to roll out the programme to across its 13 districts. NIPI is supporting the implementation of FCC with IPE Global as implementation partner in their districts and RML hospital continues to be the technical resource centre. At RML Hospital till date 255 mothers/Parent- attendant and their babies have directly benefitted from the implementation of FCC.
 6. How was the strategy implemented and what resources were mobilized?
1. Since 2015, Dr. R.M.L. Hospital is recognised as a technical resource Centre for “Family Centred Care for sick newborn” (FCC). Through iterative process of implementation research an implementation framework to move this concept into practice and scale up as a replicable model for programmatic implementation in consultation with MOHFW, GOI has been developed. Necessary training and resource materials have also been developed namely: o Audio-visual parent training tool Session 1- Nursery Entry Protocol- https://youtu.be/S2_nvcDSkIY Session 2- Developmental supportive care- https://youtu.be/ALoGXC6-RQk Session 3- Kangaroo mother care- https://youtu.be/kKjNbYJ-R9w Session 4- Care after discharge at home - https://youtu.be/Hbd14bq1iy8 o Training Guide - http://www.nipi.org.in/wp-content/uploads/2016/08/20.pdf o Operational Guidelines- http://www.nipi.org.in/wp-content/uploads/2016/08/21.pdf o IEC material on FCC 2. RML Hospital is conducting implementation research to fine tune the implementation framework for the strategy as well as undertaking quality improvement initiatives within ambit of FCC. Broadly the strategy of implementation involves moving from a predominantly provider centric to a shared model of newborn care, where parents and providers work together to ensure the well-being and survival of the most vulnerable newborns. It builds upon the Kangaroo Mother Care (KMC) and optimal feeding for low birth weight babies which were already existing. The strategy is designed to align with India Newborn Action Plan 2014. A strategic plan for Scaling up of Family Centered Care in Public Health System is outlined below: o Sensitization of State and District Managers o Facility mapping: Identifying sites where FCC can be initiated o Training of Trainers o Institutional support for FCC o Human resources for FCC o Monitoring and Evaluation o Linking FCC with community based care o Budgets for operationalizing FCC A. FCC was recognized by MOHFW as one of the top 5 Innovative best healthcare practices at the 3rd national summit in August 2016, MOHFW and thereafter GOI have approved the programmatic scale up across all the states. Since health is a state subject and there is approval from MOHFW, GOI and State NHMs are on board for programmatic implementation. B. A consortium has been formed of Dr. R.M.L. Hospital along with INCLEN and NIPI as implementation partners with approval of MOHFW and GOI. C. State Health Governments (Madhya Pradesh, Odissa, Rajasthan) have implemented FCC in all their districts. Bihar and Andhra Pradesh are in process of scale up of this intervention across their district-SNCU’s.The budget for FCC is earmarked out of state NHM budget in the respective year’s annual PIP. USAID-ASSIST is partnering with Dr. R.M.L Hospital in working on Continuous Quality Improvement within framework of FCC.

 7. Who were the stakeholders involved in the design of the initiative and in its implementation?
Multisectoral collaborations have been integral to the genesis and implementation of the concept of Family Centred Care for Newborn care. Involvement of different stakeholders during stages of development of various activities have been as follows: 1) The concept of Family Centred Care itself rests on the foundation of a collaborative partnership between the conventional care provider (nurse\ doctor) and the family for care of a sick newborn. 2) Development of training package: A simplified comprehensive audio-visual training tool was prepared with multidisciplinary technical input from a neonatologist, community medicine specialist, psychologist, nurse, and hindi-language expert. This enabled creation of an operational, culturally sensitive comprehensive audio visual training tool, unique of its kind for skill building of parent/families. a) Translation to public health (with Dr. R.M.L. Hospital as the technical resource centre) started in December 2014 after GOI approved pilot implementation of FCC in 5 districts of 4 states with the help of UNDP-NIPI newborn project for a well-coordinated effort and to help with the adaptation process in district and sub-district settings. b) To facilitate the pilot, an MOU was signed early in 2015 with NIPI for the last two years. Currently as RML-NIPI Newborn project. c) After inclusion in Innovative best healthcare practices at the 3rd national summit in August 2016, MOHFW and GOI have approved the programmatic scale up of FCC across all the states. d) A consortium has been formed of Dr. R.M.L. Hospital along with INCLEN and NIPI as implementation partners with approval of MOHFW and GOI. e) State Health Governments (Madhya Pradesh, Andhra Pradesh, Odhisa, Bihar, Rajasthan) have / are in process of scale up of this intervention across all district-SNCU’s. 3) USAID-ASSIST is partnering with Dr R.M.L Hospital in working on Continuous Quality Improvement within framework of FCC.

 8. What were the most successful outputs and why was the initiative effective?
Evidence from a randomised control trial, experience from our site and from pilot implementation in district SNCUs have demonstrated: A. Feasibility a. Piloting in 4 states (with NIPI’s support) since 2015 and our own (2010) has demonstrated operational feasibility and a demand for scale up in all districts of the states. b. Intervention was feasible across demographic, literacy, socio-economic and cultural profiles of parent attendant characteristics. Eg. About 65%-90% - fathers/ mothers & 8-20 % - grandparents; 20-60 % - illiterate, 25% -primary & 34 %- middle pass were engaged. B. Tangible Benefits have been regarding documenting improvements in processes of care and neonatal outcomes. As per the randomized control study a. Improved breast feeding rates before discharge. (80.4 % as compared to 66.7 % in control group (p= 0.007) b. Shorter duration of hospitalisation. c. No increased infection rates (Incidence of nosocomial episodes of sepsis was not different between groups [incidence rate difference 1.12, 95 % CI = -5.6 to 8.2, p = 0.71]). d. No increase in adverse event rate with this intervention between the 2 groups i.e. it is safe. e. The mortality was 8.8% in control (non FCC) as compared to 6.8% in study (FCC) group (p=0.5). As per implementation at our center we documented: f. Improvements in systems (staff sensitization and parent training sessions) at local site of implementation. (June 2016-February 2017) i. More than 90% of unit staff have been trained and sensitized. ii. Over 240 induction sessions & 81% daily training sessions were conducted for family members. iii. Over 255 family members have been trained for essential skills : 69.80% -mothers, 21.56%- fathers and 8.62%- grandparents. g. Improvements in processes of care (June 2016-February 2017) i. 240 neonates admitted have been benefitted. ii. 255 family members were involved in various care processes- nesting, positioning & cleaning their sick babies for more than 3/4th of their babies’ hospital stay. iii. 58.35% newborns received critical to life all breast milk iv. All the eligible babies (n=77) received thermoregulation through Kangaroo mother care. Pilot Implementation results of FCC established in five SNCUs: h. 2,209 mothers/parents received FCC sessions (Sept 2015-March 2016) i. Initial assessment showed improved breastfeeding and KMC rates. C. As per an externally evaluated qualitative study a. Continued care giving practices post discharge at home by parents. b. Acceptability of the intervention was documented among providers and receivers (family).

 9. What were the main obstacles encountered and how were they overcome?
• “Family Centred Care (FCC) for sick newborn” as a strategy is seemingly simple and appealing with numerous advantages for all stakeholders involved i.e. the baby, family and the nurse –doctors. FCC is truly much more than just training the parent attendant with certain skills in newborn care through use of an audio-video tool. • There is a huge component of softer skills to be acquired on part of the conventional health care provider i.e. nurse and doctor, requiring a mindset change in the approach to Newborn care becoming Family Centred, being more permissive to allow responsibility sharing with parent attendants and still providing constant oversight and be accountable for care. • Challenges during implementation have been to get the health care personnel to accept parent-attendant as a co-partner in care delivery. • Among them there was a feeling of diminished authority and uneasiness because of being constantly watched. • Institutionalizing pro-family centric structure/facilities • Providing consistent supportive supervision imparting care giving competencies were limiting at times. • Tendency for task shifting to mothers beyond the prescribed scope of activities!! • They are expected to deliver a standard of care that an empowered parent now is aware of and expects from them!!! • Hence getting on board health care provider is the most important. This was achieved in the following ways: • A module for health care provider has been incorporated in the operational guide stating what he should and what he shouldn’t do; o There is a need of initial and then repeated periodic sensitisation and training of entire heath care team including nurses, doctors and other staff whenever there is a change in staff. o Monitoring must include parameters to assess nurses’ performance of tasks as well as adverse events and hospital acquired infections must be recorded.

D. Impact and Sustainability

 10. What were the key benefits resulting from this initiative?
• Through FCC as an approach, baby receives individualized additional care (by his/her mother/parent) that is developmentally supportive and delivered in addition to the standard care provided by nurses-doctors. This way, not only the quality of care improves but also the developmental needs of a sick baby too are addressed. • Through collaborative partnership in decision making and care of their own baby, an environment is created that is culturally sensitive and responsive to family needs .This way not only their psychosocial needs of information, guidance and support are addressed but their separation anxiety and stress are allayed to a great extent. • As a result of Capacity building and involvement in care throughout hospitalization, parent attendant emerge with competencies to continuum of care at home. They are also capacitated to timely recognize danger signs to seek medical attention in case baby falls sick. • Work sharing in FCC through parental participation to aid care delivery by the staff allows better allocation of resources. This may help to tide over the exacting demands of human resources at newborn care health facility settings. Benefits Accrued: family centered care during hospitalization of a sick neonate is a cost effective, sustainable intervention that has favorable impact for all stakeholders.. • Impact on neonate: This intervention improves both short & long-term health outcomes of neonates. o Short term: improves exclusive breast feeding rates before discharge and decreases length of stay. o Long term: serves as a cornerstone for continuum of better post discharge care at home resulting in fewer re-hospitalizations and better overall growth and development of the infant. o Bridge gap between facility and home based newborn care. • Impact on family: FCC improves parent infant bonding, family satisfaction through better information, support and effective communication with the health care team. • Impact on health care provider: Deburdens the staff allowing better quality of care and allows better allocation of resources addressing the problem of human resource for health (HRH). Currently, all the sick neonates and their parents admitted at SNCU’s of 4 states namely Rajasthan, Orissa, Madhya Pradesh and Bihar (Total - 115 districts with 118 SNCU (20-40 bedded)) are the direct beneficiaries from the programme. It is expected that with the horizontal multiplicative effects of this programme, wide spread benefits will be seen in the community. The programme addresses the vulnerable group of sick newborns (especially preterm and low birth weight babies) who are mostly at the risk of dying even after discharge. Data from follow up of these babies discharged from newborn care units show that after discharge up to 10% of them do not survive till one year of life. Since the programme is about capacitating Parent- Attendants who continue to be the sole care provider at home, it is speculated that an overall favorable and sustainable impact on long term health outcomes of these otherwise vulnerable babies will be seen. Expected Impact • Improved quality of care during hospitalization. • Overcoming health workforce shortages. • Enhancing care giving competencies of parents for continuum of care at home.

 11. Did the initiative improve integrity and/or accountability in public service? (If applicable)
• When you enhance capacity and build care giving competencies in a hithertoforth a relatively unskilled parent-attendant, we truly empower them. By doing so we actually enhance society’s capacity to act for improving newborn health and thus holds promise for affecting a sustainable health care solution in our country. • Thus a social accountability for health is created among the client who was before this only a passive receiver of care. Now he is an active partner in care who is accountable for health of his baby applying essential newborn care practices at home. • Only this is likely to effect sustainable impact in the newborn health of our country as well as this empowerment is going to enhance the status of the family i.e. empowerment as such so that society carries the power to improve societal health. • Through collaborative partnership in decision making and care of their own baby, transparency and open communication that typify FCC, an environment is created that is culturally sensitive and responsive to family needs. • Family now demands a certain level of service that they are aware of that the provider must provide and hence seek an unsaid improvement in services due to being aware themselves. • Due to transparency in the system and watch dog effect due to continued presence of an “informed parent” with this strategy there is automatic improvement in quality. • Due to better responsiveness of the system and provider to family needs there is also scope for mutually trustful relationships to develop and hence a better healthcare experience of the client.

 12. Were special measures put in place to ensure that the initiative benefits women and girls and improves the situation of the poorest and most vulnerable? (If applicable)
Since the mother of a sick neonate is the primary provider, likely to be the sole caretaker for this vulnerable baby at home after discharge and she is being capacity built, truly is the movement of woman empowerment. Moreover it is this woman who is going to rear perhaps the next child as well and hence the perpetuating multiplicative effect of this empowerment will sustain the impact. Learning skills such as hand washing, importance of personal hygiene, prevention of infections, thermal and essential newborn care, breast feeding, recognizing sickness in child, providing developmentally supportive care are all going to empower mother. It is these vulnerable babies who are at risk of adverse outcomes (death) and if the mother of this child has learnt how to take care of baby, she probably can save many more in the society and that truly is the key to effect sustainable improvement in health of our society through woman as the instrument of change. The programme addresses the vulnerable group of sick newborns who are mostly at the risk of dying even after discharge. It is speculated with FCC an overall favorable and sustainable impact on long term health outcomes will be seen.

Contact Information

Institution Name:   Dr. Ram Manohar Lohia Hospital and PGIMER, New Delhi, India
Institution Type:   Academia  
Contact Person:   Dr. Arti Maria
Title:   Professor  
Telephone/ Fax:   01123404217
Institution's / Project's Website:  
E-mail:   artimaria@gmail.com  
Address:   Dr. R. M. L. Hospital and PGIMER, Baba Kharak Singh Marg
Postal Code:   110001
City:   New Delhi
State/Province:   New Delhi
Country:  

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