Nephrotic mumma: chronic illness and motherhood by Sophie Clifford

Living with an invisible chronic illness isn’t easy: you end up having rehearsed answers to lots of questions about your health, you know what it’s like to live with permanent fatigue, big worries about the future are just things you think about every day, you are incredibly good at collecting water samples in tiny bottles and you are probably on first name terms with a few of the nurses at your local hospital. Earlier this year I decided to add a baby into this craziness and the last 7 months have been the biggest learning curve of my life.

Don’t get me wrong, I would not change being a mum for the world. It is the best thing to ever happen to me, especially when I wasn’t sure if it was something that was even possible. However, 4:30 wake up calls when you are struggling with the side effects from an infusion isn’t the most helpful way to recover. Mostly, me and Jude; that’s my little boys name to save me calling him baby all the way through this, have adjusted well. We’ve coped with a pretty stressful induction as I wasn’t allowed to go over the 40-week mark due to my nephrotic syndrome. I had a relapse into my condition when he was just three months old and we muddled through meds, changing our feeding and infusions on the day ward.

We may have managed to get through my relapse pretty well, but it brought back something I had a lot in pregnancy; the fear that due to having a chronic illness and everything that goes along with that, I would not be a good mum. The guilt I feel when I’m fatigued and aching from rocking him to sleep is inescapable, the worry that I’m not going to always be my full energetic, up for anything self when he needs me weighs on me heavily and I think about it a lot. Due to having to reintroduce my medications I had to stop pumping milk a lot earlier than I had planned and that was something it took me a long time to be happy with. I was never the sort of person to be like I must breast feed but, it felt like the decision was took out of my hands by my health.

Despite the worries I’ve carried around, because of my own journey with chronic illness, I know that Jude will be raised to be understanding and empathetic of peoples struggles, whether they are visible or invisible. He will know that everyone is different and that should be celebrated. Whenever I worry about my ability as a mum, I just have to look at Jude’s smiling face and know that he is happy, healthy and loved. Whatever comes our way with my health or anything else, my little family will muddle through it together.

Dr Jenny Waite-Jones discusses International Disability Day

Given that one in every ten of the world’s children has a disability (1) the International Disability Day offers the opportunity to reflect on how nursing has been transformed from caring for disabled children within institutional settings to its current aim for family nursing. This includes caring for children within their own homes whenever possible. … Read more Dr Jenny Waite-Jones discusses International Disability Day

The importance of pride for the LGBTQ+ community

In the UK we have just had pride month, which is a very important month in the LGBTQ+ calendar. Pride month is all about celebrating the achievements of those who fought for the LGBTQ+ movement back in 1969 and the progress that has happened within the community since, uniting and coming together over everything that … Read more The importance of pride for the LGBTQ+ community

Spotlight on planetary health

Today, Nursing Times published an article co-authored by Diana Greenfield and Veronica Swallow. This was based on a blog initiated and authored by Diana Greenfield, one of our IFNA – UK and Ireland Chapter Executive Group members. Click here to read the article on Nursing Times. Diana drew on the IFNA Position Statement on Planetary … Read more Spotlight on planetary health

Racism influences family health

IFNA President, Professor Sonja J. Meiers PhD RN PHN  The International Family Nursing Association (IFNA) embraces a compassionate family focus on health, social justice, human dignity, and respect for all. The vision of IFNA is to transform health for families worldwide. The senseless and tragic instance of 46-year old African American Mr. George Floyd’s death … Read more Racism influences family health

New website launched to support family-focussed healthcare in UK and Ireland

New website launched to support family-focussed healthcare in UK and Ireland COVID-19 has seen more families caring for loved ones with acute illnesses and now Sheffield Hallam University has co-designed a new website dedicated to supporting the role of family-focussed healthcare in the UK and Ireland. Family nursing, midwifery and community care focuses on promoting … Read more New website launched to support family-focussed healthcare in UK and Ireland

How family nursing can promote shared decision-making and patient safety

Rachel Power, Chief Executive of The Patients Association In our recent report, Being a Patient, we found that patients found being ill frustrating, frightening and left them feeling vulnerable. Although the report also identified positive aspects, such as having received high quality care, and valuing the expertise of the clinicians who treated them, our overall … Read more How family nursing can promote shared decision-making and patient safety

Family nursing – why and what is it?

Professor Alison Metcalfe PhD BSc RN PG Cert

For decades, nursing in all specialties in the UK has focused on improving and developing patient-centred or client-centred care. Highly laudable and imperative to providing care that recognises the patient / client as an individual, with their own values, beliefs, knowledge and experiences. However, some nurses are beginning to recognise that patient-centred care is only the tip of the iceberg in assisting patients / clients to recovery, healing or learning to live with long-term conditions or adjust to life changing events such as childbirth, death and bereavement. Patients or clients’ management of their health, illness and wellbeing is dependent on their most ‘significant others’, their families and friends or ‘relational care’.

Read moreFamily nursing – why and what is it?

The vital importance of family nursing and midwifery in the UK and Ireland

Professor Veronica Swallow, Professor Alison Metcalfe and Professor Veronica Lambert, Chapter Co-leads, reposted from the Evidence-Based Nursing blog, published in March 2020

Nurses and midwives (nurses) play a major role in supporting people across the life-course. Within multi-disciplinary teams nurses support many patients/clients remotely, but patients/clients rely predominantly on family members for home-based support with self-management. Family nursing provides nursing care to the whole family and to individual family members with attention to relationships among members. When one person in a family has health support needs this can bring family role-changes that cause stress to the family unit, while individual family members may struggle to adapt to the altered circumstances.

Read moreThe vital importance of family nursing and midwifery in the UK and Ireland

A COVID-19 message from the IFNA President and President-elect

IFNA President, Professor Sonja J. Meiers PhD RN PHN and IFNA President-elect, Professor Veronica Swallow PhD MMedSci BSc (Hons) RGN RSCN

Dear IFNA colleagues around the world, these COVID-19 (novel coronavirus) times are unprecedented and uncertain for nurses and midwives (hereafter referred to as nurses) caring for families in uncharted territory. The 2020 Year of the Nurse and Midwife initiative has taken on new meaning as nurses are on the frontlines ensuring access to safe and quality care. We receive messages each day from IFNA members telling stories of unfailing compassion with patients suffering from COVID-19 and its complications. In the context of COVID-19, nurses in hospitals are seeing the suffering that patients and clients (hereafter referred to as patients) experience without their families present due to restricted visiting. In addition, nurses in the community and other care facilities are seeing family members being separated because of local Quarantine and Self-isolation regulations that are designed to reduce the risk of cross-infection.

Read moreA COVID-19 message from the IFNA President and President-elect