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Updated: Sep 15, 2025

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Transformed Parenthood in the Face of ALS: A Profound Struggle for Both Ill Parents and Co-parents

Nina Malmström1, Joakim Öhlén1,2,3, Stefan Nilsson1,2,4

  • 1Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Global Qualitative Nursing Research
|July 15, 2025
PubMed

Insights

Parenthood is profoundly impacted when a parent has amyotrophic lateral sclerosis (ALS), creating a struggle to balance personal grief with supporting children. Tailored healthcare support is crucial for these families.

Area of Science:

  • Neuroscience
  • Family Health
  • Psychology

Background:

  • Progressive, fatal neurodegenerative diseases like amyotrophic lateral sclerosis (ALS) significantly impact family health.
  • Parenthood is uniquely affected, highlighting an urgent need for specialized healthcare support.
  • Research on parents with ALS is limited, underscoring the need for this study.

Purpose of the Study:

  • To explore the lived experience and meaning of parenthood for individuals diagnosed with ALS.
  • To understand the challenges and support needs of ill parents and co-parents raising children at home.

Main Methods:

  • Qualitative interpretive study involving 26 parents (13 ill parents, 13 co-parents) in Sweden.
  • Phenomenological hermeneutical analysis applied to interview data.
  • Structural analyses to depict the impact of ALS on parenthood.

Main Results:

  • ALS profoundly redefines parenthood, presenting burdensome and complex challenges.
  • Parents experience a significant struggle balancing their emotional pain (grief, worry) with the need to remain stable for their children.
  • The study illuminates the redefined meaning of parenthood under the shadow of ALS.

Conclusions:

  • Families affected by ALS require more proactive and tailored support within ALS nursing.
  • Early integration of palliative care approaches is essential.
  • Addressing the parental perspective is critical for promoting family health in the context of ALS.

Keywords:
Swedenamyotrophic lateral sclerosiscaregiverfamily supportgriefmotor neuron diseasepalliative careparenthoodphenomenological hermeneuticssuffering

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