ABSTRACT
INTRODUCTION: Among people diagnosed with Amyotrophic Lateral Sclerosis (ALS), there are parents with children living at home. Children in families experiencing severe illness are exposed to stress and health risks. Since 2010, healthcare personnel in Norway must assess whether patients have children under 18 years of age and make sure the children's needs for support are met. A child's ability to cope with family life affected by a serious illness depends on how the parent without the disease manages the situation. Little is known about how the partner of someone affected by ALS manages being next of kin and a parent simultaneously, and what kind of support they need. METHODS: During 2021-2022, six semi-structured interviews were conducted with partners to persons with ALS, whom had children living at home. The interviews were transcribed verbatim and analysed through qualitative content analysis. RESULTS: Three themes with subthemes emerged: (1) Together, yet alone; (a) restricted home life, (b) missing the sharing of responsibilities and tasks as equal parents, and (c) caught between children's and partner's needs; (2) Experience of coping while waiting for death; (a) cherishing the moments, (b) sense of coping and concern, and (c) ensuring to get recharged; and (3) Support in times of need; (a) difficult to ask the network for help and (b) the healthcare system does not see the whole family. CONCLUSIONS: Our respondents felt alone, caught between the needs of their children and partner, without necessary support from the services, and were left to handle everyday life with all new challenges on their own. Future healthcare services need to consider the challenges faced by families dealing with life-limiting illnesses. A family-focused perspective is needed, so is peer support and interventions that address both emotional and practical aspects of life with an ill partner.
ABSTRACT
OBJECTIVES: The aim of this review was to provide a systematic overview of knowledge on how advanced cancer in a parent impacts the healthy parent's role in a family with children aged 6-12 years, and the types of help that they require in order to cope. Despite the large number of families living with a parent affected by cancer, the literature is limited concerning the needs and outcomes for the healthy parents and their need for support in managing their children's needs, when the partner is seriously ill or is in the palliative phase of cancer. METHOD: Comprehensive literature searches were undertaken by systematically searching for qualitative articles published during the period 1989-2009. The quality assessment was evaluated using a predefined "checklist to assess qualitative research." RESULTS: Seven articles met our eligibility criteria. Four distinct themes emerged that describe the healthy parent's role in the family, whose life is now characterized by uncertainty and who is attempting to maintain a balance between the needs of their children, the patient, and themselves: (1) new roles without a script, (2) attempting to maintain a safe and normal life, (3) feeling alone even within the family, and (4) support to help young family members. SIGNIFICANCE OF RESULTS: The present review provides new knowledge and insight into how healthy parents manage the challenges in parenting young children, coping with their everyday lives, and taking on new roles when their partner has advanced cancer or is dying. The healthy parent cannot balance the needs of all family members. To reach the goals of palliative care, nurses and other health professionals are encouraged to offer the patient, the healthy parent, and the children practical and emotional support.
